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Project 8p is a partner or member of many of these organizations below. They are useful sources of information for patients, families, and the scientific community. Please contact us and we can help you navigate these resources and Project 8p’s relationships with these affiliates.
Chromosome 8p partner organizations:
Project 8p Social Media Links
- Facebook Public Page – Project 8p, a rare chromosome 8p disorder – please follow for updated news on Project 8p and rare diseases.
- Facebook closed group for patient families – request to be a member. 8p deletion/duplication research group
- Facebook closed group for patient families and related parties – request to be a member.Chromosome 8p Disorder Parents & Therapists
- Others: search for Chromosome 8 in facebook and ask to join relevant associated groups
- Twitter @chromosome8p – follow us
- Instagram @chromosome8p – follow us
- Follow and Add #project8p and #chromosome8p to help raise awareness and advocate for this rare disorder
Genetic Alliance
Advocacy with tools and programs to promote access to information, research and services for patients and families affected by genetic diseases.
Unique
Join as a free member and find resources on your disorder, how many members are registered with the same disorder, and subscribe to newsletters.
Oprhanet
A rare disease database that provides information on genes or conditions. On each specific rare disease page, there are links to patient organizations and expert medical centers noted for that specific disease.
Rare Diseases International
[Geneva, Switzerland] Rare Diseases International is a global alliance of individuals living with any rare disease. It aims to bring together national and regional rare disease patient organizations and create a strong common voice to advocate for rare disease as an international public health priority.
Centogene
If you want to try to getting a whole exome sequencing test and cannot afford it, try applying to centogene.