The following organizations are focused on helping individuals and families touched by a rare disease.
Global Genes is a leading rare disease patient advocacy group whose mission is the "eliminate the challenges of rare Disease". They have toolkits to help individuals and families become advocates and share their story. Rare Toolkits
The National Organization for Rare Disorders (NORD) is a federation of voluntary health organizations helping people with rare diseases through programs of education, advocacy, research, and patient service. NORD has information on connecting with others at the following link: http://rarediseases.org/for-patients-and-families/
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Toll-free: 1-800-999-6673 (voicemail only)
RareConnect is an online resource where rare disease patients and families can develop communities and conversations across the world. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders). https://www.rareconnect.org/en
Facebook is another way to connect with others through online communities.
GenomeConnect is a patient portal, or registry, that is working to build the knowledge base about genetics and health that will allow researchers and doctors to study the impact of genetic variation on health conditions. This group recently announced that interested participants may now connect with one another to find others with a similar diagnosis. Visit the following link to learn more about this resource. https://www.genomeconnect.org/
Last updated: 10/7/2016
We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please