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Last month, the Histiocytosis Association sent 3 people to the NORD Breakthrough Summit. Histio Ambassadors Tim and Hank, and the Executive Director Jen Silvers. Tim, Hank and Jen all share their experience below. Jen Silvers also attended TargetCancer Foundation’s Think Tank on Advancing Precision Medicine in Rare Cancers in Boston, MA last month and she recounts her experience there at the end of this post.

Tim

It was very enlightening to attend the NORD Breakthrough conference in Washington D.C. on October 19^th  through the 21^st. There were roughly 900 attendees representing many rare diseases. We heard presentations on many different subjects including starting and running a support group like ours. Many of the support groups present at the conference were just getting started, while some have been organized for decades. We also heard from many qualified presenters, on research efforts, funding, and other subjects making this a world class conference for groups like ours. Both enjoyable and enlightening is how I would best describe this conference.

I will say that we, as members of the Histiocytosis Association, should be proud of what our group has achieved. In my opinion, we are far ahead of many others in terms of organization structure, fundraising, awareness, and support.  I did get the feeling that the NORD team is aware of our success and more than willing to help us grow.

You can see highlights of this conference at https://nordsummit.org/

Hank

Attending this year’s NORD Breakthrough Summit was both rewarding and inspiring. These gatherings offer a powerful opportunity to connect with patients, caregivers, and advocates, each with their own story of strength and perseverance. Listening to children, young adults, and families share their journeys through the uncertainty of rare disease reminds me why we must continue pushing for meaningful change.

While the experience was uplifting, I was disappointed by the last minute cancellation of NIH and FDA representatives. I had hoped to gain insight into current initiatives being pursued by both agencies. From a layperson’s perspective, it remains concerning to see government entities often working independently rather than collaboratively, especially when unified efforts could accelerate progress for rare disease patients and their families.

Leaving the Summit, I felt renewed determination to advocate for stronger collaboration, better communication, and lasting reform that gives every rare disease patient the hope and support they deserve. As a rare cancer survivor, I am reminded that each day is both a gift and a responsibility to use my voice, my experience, and my faith to help others find their strength and know they are not alone in this journey.

Jen Silvers

I had the privilege of attending the NORD Breakthrough Summit in Washington, D.C., a powerful gathering of patient advocates, researchers, policymakers, and industry partners dedicated to improving the lives of those living with rare diseases. The energy in the room was inspiring as leaders shared innovations in research, policy, and patient-centered care that are reshaping the rare disease landscape.

As the Executive Director of the Histiocytosis Association, it was an honor to represent our community and to join conversations focused on collaboration, equitable access, and the future of rare disease advocacy. Each discussion reinforced the importance of amplifying patient voices and building bridges between science and hope. I left the Summit encouraged by the progress being made and deeply motivated to ensure that our histio community continues to be part of these national conversations that drive real impact.

Continuing my travel up the east coast, I also attended the TargetCancer Foundation’s Think Tank on Advancing Precision Medicine in Rare Cancers in Boston, MA. The event brought together an incredible community of researchers, clinicians, advocates, and industry leaders united by a shared mission: to accelerate progress for those affected by rare cancers and rare diseases like histiocytosis. The discussions centered on innovation in research, collaboration across sectors, and the power of patient engagement to drive meaningful change. The collective dedication in the room reaffirmed in our commitment at the Histiocytosis Association to fostering partnerships that bring us closer to improved treatments, greater understanding, and ultimately, cures.