Rare Disease Committee Co-Chaired By Cure AHC President
Global Genes Project has partnered with many biotech/pharma firms, healthcare professionals, other industry experts, government, and patient advocates to work to reshape experiences families have in dealing with a rare disease. Part of this partnership process involves committees that are developing directories & guides to help families and patients with rare diseases easily access available resources. I am proud to serve as the Co-Chair of the Patient Access Committee and have been asked to help compile two comprehensive databases (see details below). I could certainly use your help in adding to either of these databases as you are able:
1. Resources for patients and advocacy groups to drive access and therapies
- Programs by state (US) or Country that provide care services for special needs children and adults.
- Specific therapies (physical, occupational, developmental) that have benefited your rare disease sufferer.
- Technology that has helped with learning, mobility and communication.
- Inclusion programs that help developmentally disabled individuals experience as much as possible as that of their typically developing peers will experience.
- Specific clinics or centers dedicated to various diseases.
- Other resources that come to mind (this category is purposely vague, so anything you think may be helpful is welcome – if something helped your child chances are it might help someone else).
2. Database of disease specific advocates who volunteer to help others
- Are you willing to help others with the same disease you are connected to?
- Are you willing to help anyone dealing with any rare disease?
Anything you can share regarding this list is very helpful. Please email email@example.com with your ideas. Call 919 488 4217 (9 AM – 5 PM EST) or email if you have any questions.