Hello,
My dear friends, I believe that this community is huge and incredibly important. I have an idea that I hope we can all collaborate on implementing. If each of us sends an emails to the relevant authorities in our regions, as well as research centers and universities around us, sharing our stories, it would contribute to attracting more attention.
I heard that May 20th is the annual day for this disease. Perhaps we can repeat it annually. Undoubtedly, research for this disease is ongoing, and the future looks promising and beautiful. However, we can try to contribute to accelerating the research, increasing awareness, and fostering interest.
I have discovered that this community and the Reddit page are currently the largest gatherings for this disease, so I have posted this message in both communities.
No matter how old this message may be when you read it, I believe that every action can lead to making a difference, for us and for the future.
Peace ✌🏼