Patient Support Groups for Rare Diseases
Combined Health Information Database – http://chid.nih.gov/
This web site handles not only everyday concerns like weight control and alternative medicine assistance but all other type of diseases as well. From AIDS and Alzheimer to Diabetes and Urologic disease. The link for “Medical Genetics and Rare Disorders” brings to to the National Human Genome Research Institute and NIH Office of Rare Diseases links where they have come together to provide an extensive database of contact information for organizations on genetic testing , gene therapy, inherited disorder, rare disorder and much more.
Genetic Alliance – http://www.geneticalliance.org/
The web site has extensive list of disease support group with a enormous range of disease, all with links to websites. They have an electronic newsletter that keeps you up to date with events and limelights member organizations.
NORD (National Organization for Rare Disorders) – http://www.rarediseases.org/
This group is a coalition of voluntary health organizations assisting organizations that serve along with aiding people with rare diseases individually as well. The site includes subscription database, index of rare disease, index of organizations and much more.
If monetary expenses are your concern contact Financial assistance Information – http://www.genome.gov/11008842 as they have the resources in finding financial aid for medical treatment. Go to these web sites often as they are updated with new and valuable information as soon as it is available. Some of the categories you will find will be:
– Paying for Medical Care and Procedures
– Financial Aid for Medical Treatments
– Paying for Medications
– Assistance with Insurance Problems
– Clinical Trial Participation
If you reside outside the United States there are a list of organizations that provide information and support at Organizations for Support Groups & Information (International Organizations) – http://www.kumc.edu/gec/support/grouporg.html#internat . Ranging from Australia and Belgium to Denmark and Sweden and the UK, with many more countries in between. Try EURORDIS (European Organization for Rare Disorders) web site as well as this has an alliance of patient association aimed at assisting in the quality of life for European people with rare diseases.
If you are interested in starting a support group yourself try http://www.mentalhelp.net/selfhelp . It will give you a start on developing your own self-help group.
Final note: Do not just limit yourself to what is listed above…..there is a wealth of information out there. Whether it comes from web sites, libraries, local hospitals or by word of mouth. Don’t be neither afraid nor embarrassed about your medical condition – open up and let life in.
