The CJD International Support Alliance (CJDISA) was formed by a group of grassroots nonprofit organisations that share one vital factor: a commitment to prion disease victims, their families, and those at risk for prion disease. CJDISA was founded to fill the gap that exists on an international level and to assure excellence in the service to individuals affected/at risk of prion disease, their families, and caregivers. The participating organisations are dedicated to work together in meeting the educational, social, emotional, spiritual and practical needs of those they represent. Under the CJDISA umbrella, these organisations collaborate on educational initiatives, information dissemination, resource allocation, program design and implementation,and advocacy.
The CJDISA was founded on the belief that by raising awareness of prion disease and educating healthcare professionals and the public at large, they could:
- Help remove the stigma surrounding CJD and other prion diseases
- Promote research activities around early detection, prevention, treatment opportunities, improved quality of life and ultimately a cure
- Increase proper utilisation of resources
- Promote continued access to care for those in active disease or those at risk for prion disease
- Assist in ensuring safe blood and food supply.
The CJDISA membership current consists of 14 support organisations covering 13 countries. The CJDISA continues to encourage and assist the development of more support organisation around the world so that CJD and other prion disease patients, their families and those at ‘increased risk of developing CJD’ can access information, help and much needed support.
32 prion researchers and professionals, dedicated to support families affected by CJD and other prion disease, form the ‘Friend and Alliance Group’ of the CJDISA.
Suzanne Solvyns & Deana Simpson