Sascha Gallardo – January 31, 2022
Ben’s Friends to launch Self-Advocacy Project for members
Having a rare and chronic illness is definitely not easy. From searching for an accurate diagnosis to finding the doctor you can trust as well as undergoing different forms of treatments and procedures, all these things and more certainly bring a lot of challenges.
Despite these, however, we believe that advocating for one’s own health can make a huge difference in a patient’s life.
And that’s what we always strive for at Ben’s Friends–to help improve the lives of people touched by a rare and chronic disease.
That is why in the past two years, we have devoted much of our time to projects that would help patients advocate for their well-being.
Patient Self-Advocacy
Our co-EDs Tom James and Clasina Field are creating educational materials that will provide our members with the necessary information so that they can become self-advocates.
Among other things, we hope to guide our members in carefully selecting the doctors who they would trust to provide the kind of care they deserve. We are also sharing some tips on how to better communicate with their care team and how to properly prepare their medical records and other information relevant to their medical journey.
The learning materials are definitely packed with invaluable information as they were products of Tom and Clasina’s many years of experience both in helping rare patients as well as in advocating for their own health themselves.
We are now beta-testing the materials in some of our communities to get feedback so we can improve the materials further.
Ben’s Connections
Also, part of advocating for one’s own health is being able to participate in available clinical trials patients are interested in. And they should be able to do this with ease knowing that their personal information is safe.
Ben’s Friends is working on Ben’s Connections, a patient registry that will provide our members relevant information about the treatment trials and studies they can apply for.
Access to Ben’s Connections is only through membership in a Ben’s Friends community. And by design, Ben’s Friends communities encourage members to maintain their anonymity when creating their member profiles.
We do not ask members to provide their name nor their age when creating a profile. Because of this, they can rest assured that no one can know their identity in a Ben’s Friends community. In addition, there is no digital connection between Ben’s Connections and the Ben’s Friends community. At Ben’s Friends, you own and control your personal information at all times.
Only the best care for our members
Of course, we want our members to receive the best care they can possibly get, as well as safe social and emotional support.
While dealing with a rare and chronic illness is never easy, we hope that through these projects, we help make a huge difference in our members’ lives.