By Chelsey Fix, Advocacy Manager
I blinked and it turned into November! It seems like no time at all since we started this important advocacy work during Awareness Month in May, but I have to remind myself that it has been 6 months! Besides the essential work we have done together to advance HR 2905 and to get GBS on the DOD PRMRP list, we have also been making moves to grow and expand our advocacy work in other ways. This includes doing activities that we affectionately call “Advocacy Off The Hill”.
I had the great pleasure of traveling regularly throughout the past few months to different meetings, conferences, and key events to work on making connections that will help us find new ways to improve life for the GBS|CIDP community. Now that I am firmly back in the home office for awhile, I am happy to share some thoughts and updates from my travels!
The NORD Conference
Key Takeaways: This year’s NORD conference focused heavily on outlining how / why groups like the GBS|CIDP Foundation need to partner with both industry and the government to improve life for rare diseases patients. My other observation was that advocacy at the government level starts with a relationship. As advocates for the GBS|CIDP Foundation, we can do better by making relationships with lawmakers.
Action Steps: I left NORD feeling inspired to do 3 things:
1) Build a stronger partnership with the National Institutes of Health (NIH)
2) Start a conversation with the FDA
3) Grow our state level advocacy program.
BONUS: The GBS|CIDP Foundation International boasted an Advocacy Poster that highlighted how we built a community around a common cause together.
NeuroNEXT Annual Meeting
Key Takeaways: NeuroNEXT is a network of hospitals – most of which are linked to a university – that do research together through a centralized approach. The expertise of the network is around rare neurological disorders, and they are strongly partnered with the NIH. The main discussion topics focused on what the network should research next and how to do research that is diverse and inclusive.
Action Steps: My goal for NeuroNEXT is help the GBS|CIDP community have a voice in the priorities that are set for the network.
Meeting with the NINDS/NIH
Key Takeaways: The National Institute for Neurological Disorders and Stroke (NINDS) is the branch of the NIH where GBS|CIDP research generally falls. The Foundation has wanted to work with this institute for some time to find ways to advance GBS|CIDP research more quickly, and this meeting showed that the NINDS is taking this seriously.
Action Steps: We made some big plans with the NINDS staff – stay tuned!
FDA Public Workshop: Opportunities & Priorities for FDA’s Office of New Drugs
Key Takeaways: The FDA is always looking to safely bring cutting-edge treatments to the market in the US, especially for rare disorders with limited options. Industry and researchers are constantly trying new clinical trial designs that would make drug research more efficient, and the FDA is working hard to keep up.
Action Steps: It’s time to chat with the FDA about the unique challenges of the GBS|CIDP community and how we can help with drug development!
Advocacy doesn’t always have to involve meetings with Members of Congress; advocacy can be about bringing your voice and story to any decision maker to help them understand life with GBS, CIDP, or variants. There is so much exciting work going on “off the Hill”, and it is important that we work with all of our partners to bring the community’s perspective to that important work. We will do our best to keep you updated about new opportunities to get involved.Need more resources? Join our community!