Accelerating Research on Your Condition
For help in accelerating research on your condition/disease:
- Read any sections in which you are interested in WikiAdvocacy.org- a compensium of advice on starting and sustaining an advocacy organization.
- Consider the resources mapped in Advocacy Atlas, designed to help individuals and communities navigate a diagnosis and associated issues.
- Once you have read extensively, take a look at the Navigating the Ecosystem of Translational Science web pages and see where you might want to begin – check out the various linked resources.
- Consider Genetic Alliance’s registry and its associated technical assistance: Program for Engaging Everyone Responsibly (PEER), since it is one of the basic tools you will want to create to accelerate research on your condition.
- Consider biobanking.
- Take a look at Disease InfoSearch to see what other support groups are doing.
- Consider joining Genetic Alliance Community Forum where you can ask other leaders questions. Simply ask to join and we will add you.
- For more information see attachments bellow.
Pdf documents:
