Partners & Helpful Links 

 

These organizations are useful sources of information for patients, families, and the scientific community at large.  As you peruse these sites, please send us any ideas or questions you may have and we will work with you to navigate Project 8p’s relationships with these affiliates.  

 

 

1. Partner websites:

Chromosome kids like me book cover.jpg

2. 8p Social Media Links - 

3. 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

4. Chromosome Disorder Outreach - Patient families can join as a member 

5. imagenechange.org  - neurosocks with VoxxLife, proceeds go to Project 8p

6. Global Genes (US) toolkit for all rare diseases. Project 8p is a proud member of the Global Genes Foundation Alliance.

7. Genetic Alliance - Advocacy with tools and programs to promote access to information, research and services for patients and families affected by genetic diseases. In addition, the Genetic alliance has a network of more than 1200 disease-specific advocacy organizations as well as universities, companies and government agencies which they can help you to engage with.

8. National Organization for Rare Disorders

9. Genetic Alliance UK - along with Rare Disease UK and the SWAN network

10. https://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/default.htm

11. Rare Diseases International (RDI) - [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. The website includes background info about the groups activities and details of member organizations.

12. Orphanet 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.

13.  Genetic and Rare Diseases Information Center (GARD), an information center designed to provide comprehensive information about rare and genetic diseases to patients, their families, health care providers, researchers, and the public. In addition, GARD information specialists are available to discuss questions by phone.

14. International Rare Disease Research Consortium (IRDiRC)

15. International Alliance of Patients’ Organizations (IAPO)

16. International Conference on Rare Diseases & Orphan Drugs (ICORD)

17. International Federation of Pharmaceutical Manufacturers & Associations (IFPMA)

18. International Federation of Human Genetics Societies (IFHGS)

19. EURORDIS Rare Diseases Europe

19. Centogene - If you want to try to getting a whole exome sequencing test and cannot afford it, try applying to centogene.