We can't stand without support. We can't do it as individuals. We certainly can't do it as people with dysautonomia. And we can't do it as an organization. We all need each other's help.
But there are so many worthwhile organizations, so many places needing help - why help DINET?
DINET is a validated, certified 501(c)(3) nonprofit organization. Guide Star, the world's largest source of information on nonprofits awarded DINET the Silver Seal of Transparency. Vetting DINET as an organization providing the public full access to its financial filings and managerial platform.
Volunteers moderate the forum - to guarantee patients a protected place to have discussion anonymously about your health and your experiences; to share your concerns, ask questions and be supported by a community of people who understand.
DINET goes where the work is needed. DINET belongs to the Rare Diseases Clinical Research Network working within their Autonomic Disorders Consortium. Why should you care? Because it gives you access to the information that is at our fingertips - literally. New research and recruiting studies are published on our homepage as they become available.
DINET is also a member of the Coalition of Patient Advocacy Groups. Chelsea Goldstein, one of DINET's Board of Directors will be attending the annual meeting in June to discuss ways to incorporate the patient's voice into the research process, as well as other issues related to the translation of clinical research to real life patient settings.
The 2017 Survey, along with the ongoing Surveys on Facebook, give our readers another way to have their voice heard.
DINET continues to support workshops and information sessions across the world with materials, videos, and in-person talks (when possible). Most recently, DINET provided educational materials about dysautonomia and POTS for two health workshops about invisible illness in North Carolina. An in-person presentation at a NH Hospital is scheduled for late May. The more we increase awareness, the shorter the time to diagnosis and the better the treatments of the illness will be.
We post information about living with chronic illness, latest news and discoveries about dysautonomia and related disorders on our site and daily on Facebook.
Volunteers personally answer every email we receive with the best answers we can find - on our site and through other organizations.
We care...truly. We are patients & caretakers and the information we gather, the connections we make and the support we provide is just as important to our health as it is to yours. We are a 100% volunteer organization - every one of us. We give our time, our energy (between naps) to do this because we really do care and we want to help.
Edited by edriscoll