I attended the NORD Summit on October 17 & 18, 2022. What a wonderful experience! It gave me a feeling of community and opened my eyes to how I may help as an independent advocate. As someone just getting my feet wet in Rare Diseases (RDs), I learned so, so much there.
We heard from people with RDs and got a firsthand glimpse of what life is like for them. That was touching and inspiring. They have the strength and determination to obtain a correct diagnosis and obtain available treatments. They don’t take no for an answer.
People from both the FDA and NIH were there to give a talk or answer questions via informal panel discussion. They listened to people’s concerns over the years and took real action to make long-needed changes. Past efforts of the community are now coming to fruition, or will soon.
Lunch & Learns provided an opportunity to talk with other advocates and/or people with RDs. An alternative offered was to take advantage of Networking events in one-on-one discussions with other attendees. These were great opportunities for connecting with people on all levels in the continuum of RD care.
I truly feel that I have found my people and I will be honored to work with them.
Would you be interested in a Zoom meeting to discuss? If so, we can set something up asap.