Autism Network Resources for Physicians (Autism Network Resources for Physicians is a resource website listing links to autism research and related sites that will be of interest to physicians. The goal of this site is to assist the medical community in their efforts to understand autism and study the treatment options available in the hopes that someday, the treatments that prove to be the most beneficial for certain autistic populations are going to be accepted or recommended by the medical community. By taking part in the study of autism and its causes, we hope that the medical community will be able to identify at-risk children and will be able to follow or recommend certain measures to prevent autism. Physicians who view this site are asked to challenge the validity of the research, studies, and anecdotal accounts presented in the links. They are asked to be actively involved in the studies and to work with the doctors, researchers, and scientists who are studying autism.)
The Autism File (The Autism File is a quarterly magazine dealing with all aspects of autism. It is written by: * parents, * doctors, * consultants, * teachers, * anyone in the field of autism who has anything to say on any subject concerning autism. We aim to give as much information as possible, with medical updates including: * vaccination coverage, * diet and nutrition, * recipe pages for gluten and casein free diets, * problems solved, * organisations and support groups advertised, * parents, * sibling and family views on treatments tried and tested, * books, * videos, * websites to look out for, * your say, * what you want and much more.)
Autism: An Overview and Theories of its Causes (Alternative Therapies for Children with Brain Injury and Developmental Disorders This site has an immediately accesible index to the following autism theories: Opioid Excess Theories, Opioid-like substances, Dipeptidyl peptidase deficiency, Opioids and secretin, Opioids and glutathione, Opioids and immunosuppression, Gluten/Casein Theories, Opioid receptors, Urinary IAG, Fatty Acids, Gamma Interferon Theory, Free Sulphate Theory, Cholocystokinin and Autism, Oxytocin and Vasopressin in Autism, Autism and Amino Acids, Autoimmune Theory, Viral Infection Theory, Vaccinations and Autism, DPT and brain damage, MMR vaccine and autism, Action of Secretin Theories, Secretin and cAMP, Lectins and secretin, Prenatal Aspartame Exposure (This is the "Alternative Therapies for Children with Brain Injury" site.) (THIS IS A GREEAT SITE)
American Academy of Pediatrics (The American Academy of Pediatrics is committed to the attainment of optimal physical, mental, and social health for all infants, children, adolescents, and young adults.Our Web site features a wide variety of information for parents on its YOU and YOUR FAMILY page. The AAP is the definitive source of pediatric information. At their site you'll find electronic access to articles from their professional publication - Pediatrics, plus great articles such as the "Family Guide to Car Seats". In addition, there are many great books and pamphlets for sale.)
Autism Biomedical Information Network (A gateway to science-based biomedical information and commentaries on autism/PDD for parents, teachers, speech and language therapists, occupational therapists, other interested professionals, and classroom aides who are dedicated to helping persons with autism. Our commentaries on biomedical aspects of autism are based on an attitude of respect for science and the dedicated researchers attempting to learn more about autism. We also believe that only research meeting the highest standards of "good science" is the way to discover evidence-based treatments for autism. )
Autism Research Monographs (By Teresa Binstock - "Each of the papers on this web page reflects not only a goodly amount of medical research but also reflects the wonderful determination of autism-children's parents who are seeking to find answers and, in so doing, are willing to share anecdotes amidst which patterns prompted each of the monographs presented here. Most of these monographs were originally posted to the Autism-List hosted by St. Johns University and here contain some minor modifications. The original postings can be retrieved from bit.listserv.autism. My writings do not constitute medical advice. Instead, they represent seeking to understand autism-spectrum disorders and their causes and associated traits.")
Autism Center (Medications for Pervasive Developmental Disorders. Although the U.S. Food and Drug Administration has never approved a drug for the treatment of autism or PDDs, most of the medical treatments currently available for PDDs are drugs. Drugs are prescribed to address specific PDD symptoms, such as difficulty in focusing, hyperactivity, self-abusive behavior, depression, anxiety, and uncontrollable aggression. This section discusses the major types of drugs currently used, and explains why they work for at least some people with PDDs. * Antidepressants* Anti-anxiety drugs* Antispasmodic medications* Stimulants* Neuroleptics* Other medications )
Athabasca University Psychology Resources (Large list of resources by subjects)
Band-Aides and Blackboards When Chronic Illness...Or Some Other Medical Problem...Goes To School (Here is a terrific site for information on childhood illnesses and conditions. You will find articles written for children and by children.)
Biomedical Intervention Currently Applied to Autism (Back to The Future: An assessment of some of the unorthodox forms of biomedical intervention currently being applied to autism.)
Center Watch: Clinical Trials Listing Service ("You can use this site to find a wealth of information related to clinical trials, such as a listing of more than 35,000 industry- and government-sponsored clinical trials as well as new drug therapies recently approved by the FDA. Our site is designed to be a resource both for patients interested in participating in clinical trials and for research professionals.") ((It has several patient resources including : Listing of Clinical Trials This is an international listing of industry-sponsored clinical trials that are actively recruiting patients. You can use this listing to search for clinical trials by therapeutic area and geographic region. NIH Studies This section provides information on government-funded clinical research studies being conducted by the National Institutes of Health. This section now includes a comprehensive listing of clinical trials from the National Cancer Institute's PDQ® database, as well as a listing of government- and industry-sponsored trials targeting a variety of illnesses, now being conducted at the NIH's Warren Grant Magnuson Clinical Center in Bethesda, Maryland. Clinical Trial Notification Services If you are a patient or patient advocate looking for information about clinical trials, sign-up here to be notified when new clinical trials are listed. You can also complete a brief questionnaire and you will be notified if your profile matches the needs of ongoing trials actively seeking specific study volunteers. Newly Approved Drug Therapies This is a comprehensive listing of drugs that have recently been approved by the Food and Drug Administration. The drugs are organized by therapeutic area. Research Headlines This section provides news and reports on recent advances in clinical research, developed by CenterWatch in collaboration with the Physician's Desk Reference, PDR.net and American Health Consultants. Background Information on Clinical Research Here's where to find a good introduction to clinical research -- how experimental drugs are tested in humans and how you can participate in a clinical research trial. You'll also find a glossary of commonly used terms. Additional Resources for Patients and Patient Advocates This is a list of other health-related web sites that may be of interest to patients and patient advocates. This section also includes a comprehensive listing of health associations and patient support groups
Center for Complex Infectious Disease (At present, the Web Site mainly provides information on Stealth Viruses cultured from patients with a wide spectrum of dysfunctional brain syndromes. These illnesses include chronic fatigue syndrome, fibromyalgia, Gulf War Syndrome, depression and dementia in adults and autism, attention deficit and behavioral disorders in children. Stealth viral infection can also cause severe encephalopathy. A current outbreak of stealth virus encephalopathy is affecting individuals and animals within the Mohave Valley of Arizona, Southern Nevada and South Eastern California.)
CBS Healthwatch (CBSHealthWatch, Medscape's Consumer SiteCrafted with the editorial excellence of Medscape, CBSHealthWatch offers an assortment of featured topics or health channels, including Cancer, Health and Wellness, Heart Health, Mental Health/Depression, Weight Management and many more. Our library has information to fit each individual's needs. From basic information to advanced healthcare topics to What My Doctor Reads on the latest medical trends, CBSHealthWatch is all about bringing you the right information at the right time.When you register (for free), you can customize CBSHealthWatch to fit your needs. Use our interactive tools to track your health goals. CBSHealthWatch enables patients and health care providers to work together toward a better understanding of health.)
Diseases, Disorders and Related Topics (Karolinska Institutet)
Dr. Ivan's Depression Central ("This site is Internet's central clearinghouse for information on all types of depressive disorders and on the most effective treatments for individuals suffering from Major Depression, Manic-Depression (Bipolar Disorder), Cyclothymia, Dysthymia and other mood disorders") (Surprisingly this site has lots of good information, articles and medication information resources. Definitely worth a look see)
drkoop.com (drkoop.com is a company led by Dr. C. Everett Koop, former U.S. Surgeon General, and others who are dedicated to improving the quality of people's lives by empowering them to improve their health.) (Has lots of great information and resources including a “drug checker” you can search for drug interactions and reactions with other medications you may be taking!)
Electronic Journals (World Wide Web sites of basic and clinical neuroscience journals, and some key basic science and medical journals, are included in the pages of this section. Some sites offer the full text of the journals. On others, only abstracts or tables of contents are available.)
Hardin Meta Directory (This directory of Internet health sources, updated weekly, is provided by the University of Iowa's Hardin Library for the Health Sciences. It contains a comprehensive index of health and medical information, ranging from AIDS to toxicology. This is among the most comprehensive medical sites on the Internet. It is a list of lists--large, medium and small. Spend some time here and you can locate some of the best and most accurate medical information available.)
HealthAnswers (America's House Call Network (AHCN) is an early entrant into the online health news business. With 25 member agencies of the National Health Council providing content and links to their own web sites, HealthAnswers is developing for its web site an increasingly diverse body of health information to be accessed by the general public.)
Health Care Financing Administration ("Welcome to HCFA, the Health Care Financing Administration, which administers the Medicare, Medicaid, and Child Health Insurance Programs. HCFA helps pay the medical bills for more than 75 million beneficiaries.)
HealthGrades (HealthGrades.com™’s goal is to provide information to consumers that helps them select the best quality providers of medical care. The one-of-a-kind Internet service supplies valuable information about the quality of health care provided by individual hospitals, physicians, and health plans in the United States. Most individuals know that the quality of care offered by different hospitals, hospital departments, and physicians varies. However, most people do not know where to get answers to questions, such as: * Which hospital in my area has the lowest mortality rate for coronary bypass surgery? * Where can I get a list of the leading physicians within 10 miles of my home? * Which health plan offers the best access to hospitals and physicians? Questions like these are answered by HealthGrades.com) (This is a great site with all kinds of "report cards" on hospitals, physicians and health care plans.)
InteliHealth Home to Johns Hopkins Health Information (InteliHealth, a joint venture between Aetna U.S. Healthcare and Johns Hopkins University and Health System, was established in 1996 to offer one of the most comprehensive and timely collections of health information from leading industry sources. Committed to providing the highest quality and most up-to-date health information. To provide the highest standards of quality, the information on the InteliHealth site is reviewed and approved by experts at Johns Hopkins, the nation's best hospital for eight consecutive years according to U.S. News and World Report. This is an excellent medical site for the healthcare consumer that balances easily understandable medical information with more technical and in-depth coverage. The free daily newsletter is a great way to keep on top of important health topics and we use it regularly. The site has a good, dedicated section on pediatrics.)
KidsHealth - Childrens Health and Parenting Information (KidsHealth, created by doctors and health professionals, provides information to parents and kids about a wide range of children's health care issues. Using a fun, colorful train theme, award-winning KidsHealth provides up-to-date reliable information about growth, well child care, behavior, common childhood illnesses, immunizations, asthma, hyperactivity and lots more. This is one of the most comprehensive pediatric medical sites we've found. It's well designed and divided into sections for kids, parents and professionals. The kids' section has those common, but difficult quesitions that children ask. The parents' section has one of the best reference sections on childhood diseases on the web. The information is both understandable and technically complete)
KidsSource OnLine (The source for in depth and timely education and healthcare information that will make a difference in the lives of parents and their children)
Lippencott Williams and Wilkins Journals and Newsletters (Tons of links to journals on-line, able to find a journal by specialty at this site. You can read the abstracts of articles, have to pay for full text)
Lisa's Tuberous Sclerosis Site (Here is my list of sites on Tuberous Sclerosis. This used to be a very small page due to the lack of information about Tuberous Sclerosis available on the net back in 1995, when this site was created. Things have changed.. I am so happy to see that information about Tuberous Sclerosis is becoming easier to find.)
Martindale's Health Science Guide (A "Multimedia Specialized Information Resource" currently containing over 56,500 teaching files; over 127,000 Medical Cases; 1,075 Multimedia Courses/Textbooks; 1,510 Multimedia Tutorials; over 3,570 Databases, and over 10,400 Movies (If you can’t find a reference to something you are looking for - you can probably forget it! This guy covers all the bases in just about everything, an absolute must see!!)
McWhorter School of Pharmacy Global Drug Information Service (Great site with many resources!!)
Mayo Clinic Health Oasis (The Mayo Clinic Health Oasis site is a leading provider of reliable, comprehensive health information, updated every weekday by Mayo physicians, scientists, writers and educators, to bring you up-to-date information on a wide variety of medical topics. Mayo Health Oasis provides a growing database of explanations on how to treat common and not-so-common illnesses, as well as information on disease prevention, diet & nutrition, pregnancy & children, women’s health and resource centers for Cancer, Alzheimer’s, Allergies & Asthma, Heart and Medicine. If there is anything you need to know about health for you, your family, or relatives, then start here. The renowned Mayo Clinc has brought a vast amount of understandable, yet detailed, healthcare information to the Internet. Of interest to KidSource parents will be the "allergy and asthma", "women's health" and "diet and nutrition". Be sure to check out the Pregnancy and Children's Resource Area)
Medical/Health Sciences Libraries on the Web (The Hardin Library for the Health Sciences at the University of Iowa offers access to a worldwide collection of medical and healthcare libraries. This site is a goldmine for the medically curious. It features links from the 50 states and international libraries from Argentina to Trinidad. It is living proof of the Internet's power to shrink the world.)
Medscape (Medscape's Professional Site Medscape's professional site, guided by many of the world's leading physicians and health care experts, is already an established leader in providing clinicians and other health care professionals with the timely and authoritative information they need to better serve their patients and practices. Medscape makes the clinician's task of information-gathering simpler, more fruitful, and less time-consuming; and delivers to a broad medical audience clinical information with the depth, breadth, and validity needed to improve the practice of medicine. Through Medscape's professional site, we offer specialists, primary care physicians, and other health professionals a robust and integrated multi-specialty medical information and education tool. You may choose a personal Medscape home page from an assortment of specialties, primary care medicine, and nonclinical areas such as Money & Medicine. After a simple, one time, free registration, Medscape automatically delivers to you the specialty page you choose. Medscape is built around practice-oriented content. Each specialty page pools, filters, and delivers pertinent, continually updated content from tens of thousands of medical journal articles, expert-authored state-of-the-art surveys in disease management, Next-Day Summaries from major medical meetings, and more. All of Medscape's articles are Web-enhanced and cross linked for online browsing and smart information retrieval. All the content can also be easily downloaded and printed if you prefer to do your reading offline.) ( I LOVE Medscape!!)
Miracle Flights For Kids (Throughout our 14-year history, Miracle Flights has always sought to provide free air transportation to wherever a patient needs to go, and to provide that transportation as many times as is needed. Our philosophy in dealing with these requests is perhaps best summed up in our following signature statement: When the barrier between a desperately ill child and medical treatment is distance...Miracle Flights For Kids makes the miles disappear.®)
Mosby,Inc:Health Sciences Publishing ("Mosby is committed to providing you with the information you need in the format you want. We invite you to browse through our extensive collection of medical, nursing, dental, and allied health periodicals.")
Medicine for Autism Today (The Mission of Medicine for Autism Today is to help fund research and aid in the development of a cure for autism.)
National Alliance for The Mentally Ill
NIH Clinical Research Studies Protocol Database (Search the collection of research studies being conducted at the NIH Clinical Center)
NORD National Organization for Rare Disorders,INC (Since 1983...working toward the prevention, treatment, and cure of rare "orphan" diseases. VISIT NORD'S THREE DATABASES: 1)Rare Disease Database Search the largest database of understandable information on rare disorders. Over 1,100 diseases are included. You may also search on an alphabetical index of disease names. 2)Organizational Database Search the comprehensive database of information on foundations, organizations, agencies, and support groups that assist people affected by rare disorders. 3)Orphan Drug Database Over 900 orphan drugs designated by the Food and Drug Administration. Information includes the generic name, trade name, indication, sponsor's name and address, and date of designation.
Parenting Q&A (All parents have questions, big and small, about their children's behavior, growth and development. Parenting Q&A answers them with the highest-quality information from experts in the field: professionals and parents. Parenting Q&A makes every effort to provide an answer to every question. Parenting Q&A organizes parenting answers in an easy-to-use Web site that offers parents resources, practical tips, and essays on hundreds of topics. Unlike other sites, Parenting Q&A members are guaranteed an answer. If the hundreds of answers online don't help, we'll write you a personal reply from our panel of experts. Parenting Q&A is a site rich with a wide variety of parenting information. It's divided into topics to make it easy to use. You can post questions to experts or chat with other parents)
The PDD Assessment Scale/ Screening Questionnaire
PDRnet (PDR.net is a medical and healthcare Web site created by Medical Economics Company Inc., publisher of healthcare magazines and directories including the PDR (Physicians' Desk Reference), the source trusted by America's physicians for more than 50 years. Information sites for Physicians, for Pharmacists, for Nurses , for Physician Assistants, for Consumers (they have a link to the PDR online, need to do a free registration to use this.)
Pediatric Development and Behavior Homepage (The Pediatric Development and Behavior Homepage is an independent web site created to promote better care and outcomes for children and families affected by developmental, learning, and behavioral problems by providing access to clinically relevant information and educational material for physicians, fellows, resident physicians, and students. The site may also be of interest to psychologists, nurses, nurse practitioners, social workers, therapists, educators, and parents.) (Be sure to check out "highlights" for lots of autism related information!)
Points of Pediatric Interest (John Hopkins University pediatric information site, GREAT resource, lots of subjects covered!)
Virtual Children's Hospital (The Virtual Children's Hospital, a project of the Children's Hospital of Iowa and the University of Iowa Hospitals and Clinics, provides information on children's health to consumers and health care providers. This site is rich in a wide variety of medical information for parents of children of all ages. The information is well written, easy to understand and practical. A good site to visit for many medical issues faced by parents)
THE "VIRTUAL" - PHARMACY CENTER Martindale's Health Science Guide (A "Medical Multimedia Education and Specialized Information Resource Center". (Just about anything you could want to know about pharmaceuticals will be here!)
Allergy Induced Autism (We are a U.K. based charity dedicated to identifying the underlying causes and biochemical effects of autistic spectrum disorders. If this is the first time you have visited us here at this site then read on and we'll explain how we can help you.)
American Academy of Allergy,Asthma and Immunology Patient/Public Resource Center
American Autoimmune Related Diseases Association Inc. (Links)
The Autism Autoimmunity Project (The Autism Autoimmunity Project is a non-profit charity dedicated to obtaining funding for independent research into immunological and immunogenetic abnormalities in autism. The ultimate goals of AAProject research are to 1) fully define immunological etiologies in autism; 2) develop appropriate treatment options for individuals who have autism through autoimmunity or immune system deficiency; and to 3) develop mechanisms for prevention of immunologically-based autism, such as infant pre-vaccinal screening routines for immune and immunogenetic status.)
Dr. Goldberg (Welcome... to Neuroimmunedr.com. This site was developed for both Doctors and Patients to better understand and try to find cures for Autism, CFS / CFIDS and other auto immune diseases.)
EPD (Enzyme Potentiated Desensitization)
Immunology (Nicely organized background on immunology and description of the immune system.)
American Neuropsychiatric Association
Association for the Neurologically Disabled of Canada (Disability and the Sensory Approach to Rehabilitation)
The Brain and How it Works Have you ever wondered what makes your brain work? Well wonder no more. (Using easy to understand terms, this site will teach almost anybody about the different sides of the brain, what makes you dizzy, the basics about almost every part of the brain, and much more.)
The BrainWaves Center (Learn About Your 6 Intelligence Zones (Very Interesting site, lots of neat stuff. Six zones are memory & focus, emotional response, visualization, planning ahead, language & math, and social interaction)
Brain Works by Zero to Three (Welcome to BrainWorks: Helping Babies Grow and Develop.This site is designed to provide parents, caregivers and pediatric and family clinicians with meaningful information about early brain development and the relationships between babies and their parents and caregivers that support intellectual and social-emotional development.)
Childbrain.com The Pediatric Neurology Site
eMedicine Journals > Neurology
Epileptic and epileptiform Encephalopathies Authored by James J Riviello, Jr, MD, Director of Epilepsy Program, Associate Professor, Department of Neurology, Division of Epilepsy and Clinical Neurophysiology, Children's Hospital, Harvard Medical School eMedicine Journal, July 9 2001, Volume 2, Number 7
Gateway to Neurology at Massachusetts General Hospital
Movement Disorder Society (To provide international forums to disseminate information on recent advances in both clinical and basic science pertinent to movement disorders.To encourage research in both clinical and basic sciences related to movement disorders.To enhance the education of physicians and the public about movement disorders.To enhance the quality of care of patients with movement disorders, through its support of research and education.)
The Myelin Project (Hope for Multiple Sclerosis, Leukodystrophy and the many other demyelinating disorders. The Myelin Project aims to accelerate research on myelin repair. Myelin, the white matter insulating the nerves, allows the conduction of impulses from one part of the body to another. It can be destroyed by hereditary metabolic disorders such as the leukodystrophies, and in acquired diseases such as multiple sclerosis. Behind The Myelin Project is a multinational gathering of families struck by one demyelinating disease or another. Refusing to accept the conventional view that science cannot be hurried, they resolved to advance the moment when myelin can be restored.)
Neurosciences on the Internet (Neurosciences on the Internet is an up-to-date and comprehensive index of Internet neuroscience resources that also publishes original material in all areas of the neurosciences.)
Official P.A.N.D.A.S Web Page (PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Steptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder(OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat")
The Upledger Institute (The Upledger Institute (UI) was founded in 1985 by osteopathic physician and surgeon John E. Upledger to support the work of CranioSacral Therapy (CST), a gentle hands-on method of evaluating and enhancing the function of the craniosacral system (the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord). Today, UI is recognized worldwide for its ground-breaking continuing-education programs, clinical research and therapeutic services in CST and other complementary and innovative techniques.)
UC Davis M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders. To help those with neurodevelopmental disorders live active and healthy lives, the University of California, Davis, Health System has established a unique interdisciplinary institute to conduct research and provide clinical programs focused on these disorders. Our vision for the institute includes becoming a national resource for the study and treatment of neurodevelopmental disorders. Leading scientists, physicians and educators in fields as diverse as molecular genetics and clinical pediatrics are joining forces to better understand development and brain function.
Atlas of Gastrointestinal Endoscopy
NIH Office Of Dietary Supplements
The Nutrition Analysis Tool (NAT) (The Nutrition Analysis Tool (NAT) is a web based program that allows anyone to analyze the foods they eat for various different nutrients. This tool is completely free and quite easy to use, just choose one of the options)
Nutritional and Metabolic Diseases
SupplementWatch.com (SupplementWatch, Inc. is a privately held corporation consisting of a small group of scientists, physiologists, nutritionists and other health professionals dedicated to educating people about the pros and cons of dietary supplementation. The SupplementWatch™ service was started in 1999 in response to the growing public confusion surrounding nutrition in general and dietary supplements in particular. Our aim is try to clear up some of the confusion surrounding dietary supplements and provide visitors to our site with timely, relevant and balanced advice to help them make informed decisions.)
Visceral (Visceral is the only charity in the UK, and one of a handful of charities in the US, that co-ordinates and funds research into the relationship between environmental factors and the recent increases in diagnoses of autism that have occurred in many developed world countries. Visceral’s research programme is directed by Andrew Wakefield FRCS FRC(Path), who is the charity’s full-time Chief Medical Scientist.The principal hypotheses under investigation at present concern an association between measles containing vaccines and children with regressive autism and an inflammatory bowel disease. Similar associations are also being investigated in relation to Crohn’s disease and ulcerative colitis )
European Society for the Study of Purine and Pyrimidine Metabolism in Man(ESSPPMM) (The objective of ESSPPMM is to improve diagnosis, treatment and understanding of inherited and acquired purine and pyrimidine disorders, as well as extend the knowledge of the importance of normal purine and pyrimidine metabolism in man. ESSPPMM exists to advance science and practice in the mentioned field and to further its application in the provision of health services.)
Family Village Fatty Oxidation Disorders
Fatty Oxidation and Metabolic Disorders (The FOD Communication Network is intended to be used as a resource for families, friends, doctors, researchers and others who would like to support, educate and provide a forum for the sharing of ideas and stories for those whose lives have been touched by a fatty oxidation disorder. Questions are answered, nutrition information is offered, and medical and pharmaceutical updates are discussed.Our History and Mission The Fatty Oxidation Disorders (FOD) Family Support Group™ was 'born' in 1991 as a way of dealing with the sudden death of our 21-month old daughter, Kristen, in 1985 from undiagnosed MCAD. Initially she was diagnosed with Reye's Syndrome and it was not until one year later, when our son Kevin was born and diagnosed with MCAD that we discovered Kristen also had the metabolic disorder. Our third child Brian, is a carrier of MCAD and not directly affected. To say the least, our family has been changed forever by this genetic disorder. Our mission is clear...to connect and network with FOD Families and Professionals across the world and to provide emotional support, Family Stories, practical information about living with these disorders, and Medical Updates to inform families of new developments in diagnosis, research and treatment. Awareness of these disorders is imperative for early diagnosis and treatment, prompting us to be strongly committed to promoting newborn screening for FODs; possibly through future regional testing centers. We do not want other families to needlessly go through what we have experienced.)
Fatty Oxidation and Metabolic Disorders Medical Information/Discription of Disorders (Although each FOD child/adult, even within the same family, can respond and present differently with a particular disorder, there are some similarities among all the FODs. We hope that by reading this section it will help you begin to understand how an FOD affects the body metabolically, the current treatment procedures, the ongoing research studies available to FOD families, as well as some of the other life issues that impact an affected family.)
Inborn Errors of Metabolism Organic Acidemia Association (The Organic Acidemia Association is a voluntary not-for-profit self-help organization dedicated to providing information and support to families of children with inborn errors of metabolism. Established in the early 1980s, the Organic Acidemia Association provides information to affected families and health care professionals across the country and internationally. The Association publishes the Organic Acidemia Association Newsletter, which includes updates, editorials, and letters from and for affected families three times a year)
International Mitochondrial Disease Network (The IMDN exists solely for the purpose of providing on-line support and information to those individuals who are affected by mitochondrial disease or are interested in learning more about this group of disorders.)
Metabolic Disease Supplemental Newborn Screening (The Institute of Metabolic Disease at Baylor University Medical Center resulted from a commitment to families afflicted by inherited defects that severely compromise body chemistry. Most medical institutions regard the specialty of genetics and metabolism as a "luxury" that cannot support itself solely by clinical service revenues. However, when combined with cutting-edge technology, expertise in specialized areas of diagnosis, treatment development, research, and partnership with families, maintaining such a facility is possible.Our group can provide unique diagnostic and research services affecting families worldwide. Much of what we do for these families was developed at Baylor and exists nowhere else.) (They screen for approximately 30 different metabolic disorders from one heel stick and costs approximately $25)
MITOCHONDRIAL and METABOLIC DISORDERS- a primary care physician’s guide
National Urea Cycle Disorders Foundation ("The Foundation dedicated to saving children's lives. Linking families, friends and professionals who are dedicated to the identification, treatment and cure of urea cycle disorders." Urea cycle disorders are tragic illnesses that are characterized by excessive amounts of ammonia in the blood. Without treatment, these disorders can cause behavioral disorders, mental retardation, coma, or even death.)
Neo Gen Screening, Inc. (Neo Gen Screening is a modern, state-of-the-art, newborn screening laboratory that offers the most comprehensive testing programs for newborns anywhere in the world. Our programs are innovative so that we are able to offer the highest quality of analytical testing for the lowest possible costs. The staff at Neo Gen Screening is composed of the following: scientists with specialties in biochemistry, molecular biology, and mass spectrometry; clinical consultants with backgrounds in public health, endocrinology, neurology, and metabolic diseases; and follow-up health professionals with backgrounds in nursing and genetic counseling. Our Supplemental Newborn Screening (SNS) Program includes testing for specific disorders that are not included in state-mandated newborn screening programs. Our Comprehensive Newborn Screening Program includes both our SNS Program and additional screening for disorders mandated by state newborn screening programs. We have Specialty Newborn Screening Programs that are customized to meet individual screening needs.)
Nutritional and Metabolic Diseases
Purine and Pyridimine Disorders
The Purine Research Society (The Purine Research Society was formed in 1986 by parents of children with Purine Autism (autistic children who excrete too much uric acid in their urine). Each family contributed a significant amount of money to fund M.D./Ph.D. researchers to find out why their children with autism were excreting excess uric acid, the end product of purines. Several researchers have studied the problem, and there continues to be significant progress.)
SOCIETY FOR THE STUDY OF INBORN ERRORS OF METABOLISM (The aims of the Society are to foster the study of inherited metabolic disorders and related topics. The Society, founded in 1963, exists to promote exchange of ideas between professional workers in different disciplines, interested in inherited metabolic disease. Pursuing these aims by arranging scientific meetings, publications and in other ways considered appropriate by the Council. The Council is also supported by corresponding members who provide advice and meet with the Council at the annual symposium)
The United Mitochondrial Disease Foundation (Our Mission: To promote research for cures and treatments of mitochondrial diseases and to provide support to affected families. The page lists current research that is underway, information on mitochondrial diseases, and more.)
A-CHAMP (A-CHAMP (Advocates for Children's Health Affected by Mercury Poisoning) is a national, non-partisan political action organization formed by parents in support of children with neurodevelopmental and communication disorders. We are dedicated to advancing public policy issues affecting our children, protecting their human and civil rights, educating the public and media, supporting candidates sharing our goals in state and federal elections, and holding accountable those in government who do not act in the best interest of our children.
Autism Recovery Network Vaccination Information
ARU - Autism and Vaccination (By Paul Shattrock "This webpage was set up with the express purpose of disseminating current information and research about the possible links between vaccination and autism. It is not the intention of the authors to give out medical advice about the issue of vaccination.")
Autism and Mercury Coincidence or Cause and Effect?
Autism-Mercury (yahoo group To discuss current issues related to the increasing incidence of autism and the potential link between excessive mercury exposure via thimerosal in infant vaccines.)
Chelation of Mercury for the Treatment of Autism
Chelation Therapy for Autism (Welcome! Thank you for visiting the Chelation Therapy for Autism message board. This is a place for support, discussion and friendly debate. This board is designed for those who hold the belief that heavy metal toxicity and/or environmental exposures (ie: mercury/aluminum from vaccination) are the probable cause for regressive autism. This is the main topic of discussion but subject matter is not limited to chelation alone. This message board does not constitute medical advice. Consult your physician for medical advice.)
Gary Null's Action File:Vaccinations
Meso-2,3-Dimercaptosuccinic Acid (DMSA) by Thorne Research
Moms Against Mercury ( Moms Against Mercury is a non profit 501(c)(3) organization located in the mountains of Western North Carolina. MAM is dedicated to raising awareness while educating the public of the dangerous use of Thimerosal, a mercury based preservative, used in vaccines and the flu shot. Founder Amy Carson is the driving force behind Moms Against Mercury. Her passion for eliminating mercury and thimerosal in vaccinations stemmed from personal experience.)
National Vaccine Information Center (Site maintained by Karen Schumacher. Vaccines, immunizations or innoculations are recommended for every child born in the United States. A vaccination shouldn't hurt a child but sometimes they do. Before your child takes the risk, find out what it is. is the oldest and largest national organization advocating reformation of the mass vaccination system and is responsible for launching the vaccine safety movement in America in the early 1980’s. Located in Vienna, Virginia, NVIC is dedicated to the prevention of vaccine injuries and deaths through public education. NVIC provides assistance to parents whose children have suffered vaccine reactions; promotes research to evaluate vaccine safety and effectiveness as well as to identify factors which place individuals at high risk for suffering vaccine reactions; and monitors vaccine research, development, policy-making and legislation. NVIC supports the right of citizens to exercise informed consent and make educated, independent vaccination decisions for themselves and their children.)
No Mercury (Making states mercury free, lots of great links and information)
SafeMinds Sensible Action for Ending Mercury-Induced Neurological Disorders. (Welcome to the web site for the Coalition for Safe Minds Sensible Action for Ending Mercury-Induced Neurological Disorders. This web site exists for the purpose of sharing information about the mission and achievements of Safe Minds and other organizations that are concerned about the role of mercury in medicines and its role in contributing to human disease. We are using a multi-faceted approach to achieve our goals: * We work aggressively with government agencies and legislators to facilitate the removal of mercury from all medical products. * We strongly encourage research efforts to understand scientifically how mercury in these products is causing harm and how effective treatments can be developed. * We create awareness campaigns to families and physicians to educate them about the issue. The content in this web site focuses on the hypothesis that there is a link between mercury and autism as well as other neurological disorders such as attention deficit disorder, language delay, and learning difficulties.)
TESTING FOR TOXIC ELEMENTS AND CHELATION OF MERCURY Elmer M. Cranton, M.D.
Thinktwice Global Vaccine Institute (Welcome to the Thinktwice Global Vaccine Institute website. We offer an extensive selection of uncensored information on childhood shots and other immunizations. Because this is such an important topic, we believe that parents are entitled to a full disclosure of all pertinent data, and the freedom to choose whether or not to vaccinate their children.)
US with links to every state vaccination law
The Vaccine Page (The Vaccine Page provides access to up-to-the-minute news about vaccines and an annotated database of vaccine resources on the Internet. The database has been collected and assembled specifically for this website by the editors of UniScience News Net, acting with complete editorial independence. URLs suggested by readers are always considered, and every site suggested is visited by an editor before it is included or excluded. Those editors stand behind their selections. With a single click on the latest vaccine news, readers can also access timely vaccine articles from multiple international news sources. These stories are not screened or edited by the editors of The Vaccine Page, or by UniScience News Net.)
Vaccination - HealthWorld Online (Lots of information. Toxicity of the vaccines, their adverse effects, dangers, and long- term negative consequences. )
VAERS (The Vaccine Adverse Event Reporting System is a cooperative program for vaccine safety of the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA). VAERS is a post-marketing safety surveillance program, collecting information about adverse events (possible side effects) that occur after the administration of US licensed vaccines.)
VAERS Links (The following Web sites provide additional information on vaccines and vaccine safety:)
Please be sure to check out the "Searchable Sites and Resources" page for many more medical information sites.
