-
Non-Profits and LEMS, Part 3, Myasthenia Gravis Association, EveryLife Foundation
In my final of three parts on non-profits, I want to finish with the Myasthenia Gravis Association and EveryLife Foundation for Rare Diseases.
The Myasthenia Gravis Association, mgakc.org.
As most of you may know, Myasthenia Gravis (MG) is our ‘sister’ disorder at the neuromuscular junction (NMJ). In fact, some of the medications we take are shared with MG. Talking to them personally on the phone, I learned they have no specific program or offerings for LEMS. They do have a resources library, videos, and a large number of state support groups. Though they don’t specifically focus on LEMS, the person from the non-profit invited me to use any of their resources or join a support group.
Donations to the Myasthenia Gravis Association can’t be earmarked for LEMS.I will end this with the EveryLife Foundation for Rare Diseases, everylifefoundation.org.
Their mission is to advocate for the rare disease patient community with science-driven legislation and policy that advances the development of and access to lifesaving diagnoses, treatments, and cures. This is taken from their webpage. They love gathering patient stories and presenting them to state and federal legislators. If you like working with state and federal legislation, policy and legislators, this is an organization you will want to explore further. They Sponsor the RDLA Capitol Hill Event every year in Washington, DC. All donations go to support their programs which are not disease-specific.There are other non-profit organizations around the world dedicated to specific disorders or missions within the rare disease sphere. I only dug into the ones I knew already, or quickly heard about through conversations and searching. As I have mentioned, all these organizations seem to do good work and are dedicated to their mission.
I hope this has helped you put a better focus on organizations that may interest you, and where you may wish to direct your efforts.
Do you have any awareness or advocacy efforts you’d like to share?
-
0 Replies
Sorry, there were no replies found.
Log in to reply.