Sometimes it feels like no one is ‘listening’ to you, and your experience of living with your condition is not being considered when treatments and interventions are developed. You may feel like no one understands how you are feeling or understands how your condition is affecting you. If there are no known effective treatments, those feelings of isolation are compounded.
Registries for All (Reg4All) is a new system that we have just launched to address these exact feelings – showing you how your experiences with your condition compare with others while letting you connect with researchers and support groups not just within your own disorder but across multiple disorders. We believe that adding your data to the larger health care puzzle will help create treatments quicker and more efficiently.
The goal of Reg4All is to bring your health online and give you the tools to determine who will see that information and how it will be used. We are working with disease advocacy groups like the TMA to bring all data under one roof. You currently answer questions about your conditions and receive instantaneous feedback on how your answers compare to others with the same condition or symptom when you sign up to become a member of the TMA. Reg4All will offer you the opportunity to connect to related researchers and support groups that align with your conditions. Reg4All will make you findable to them through your dynamic sharing preferences that match exactly how comfortable you are with sharing your health information. More importantly though, Reg4All will show you how your health condition does not have to isolate you – how there are thousands of others that are waiting to connect with and help you.
Reg4All was created by a nonprofit organization and is seeking additional funding to make the system even better. Reg4ALL is currently competing as a finalist in a Transforming Health Systems Challenge sponsored by Ashoka Changemakers and Boehringer Ingelheim. The challenge asked for business models that disrupt and transform health systems for patients, families, and communities. Reg4ALL does just that. We need you to help us deliver that change. Please click on this link www.changemakers.com/healthbiz and vote for Registries for All.
~ Sharon Terry, President and CEO, Genetic Alliance