Reflecting on 2024
A Year of Growth, Connection, and Advocacy in the Rare Disease Community
By Tasia Rechisky, Secretary, RNE Board Member
Rare New England (RNE) looks back at 2024 in awe of this community and how much we have accomplished together. We added two new Board members, Haley Director and Ruth Segall, with fresh perspectives and passion. Their expertise included but are not limited to policy, medical education and industry and financial analysis.
This year, RNE has focused on connecting with the community and understanding how we can make an impact. We had a regular occurrence at the Attleboro Farmers Market with our pop-up Rare Disease at the Farmers Market.There were challenges for onlookers to view the Farmer’s Market through the lens of someone with a rare disease. Even on rainy day, we met many new friends and raised awareness of rare diseases.
We also had our Roaring for Rare event at the Capron Park Zoo with free entry for rare disease patients and families. It was a fun-filled day full of scavenger hunts through the exhibits, a row of supportive vendors and partners, balloon animals, music from our amazing DJ, Evan Huddon (aka DJ Music Wheelz, who is a patient himself) and prizes. Thanks to our supporters of our children's initiative OE Local 4 Charitable Foundation, Inc., we were able to host a children’s movie night with 36 families and their zebra companions in attendance.
The name of the game is trivia–but RNE-style! At Aeronaut Brewing in Somerville, we hosted a live trivia event. The categories of Don’t Judge a Book By Its Cover and Let’s Talk about Rare were a hit. Can you answer: How many rare diseases percentage wise do not have any FDA approved treatments?
In policy, we focused on improving access to biomarker testing and rapid whole genome sequencing, PBM reform, and transparency in healthcare. Our board members contributed to a post on MassBio’s blog about Massachusetts’s leading role in rare disease treatment, wrote and published op-eds about PBM reform, which can be found in the Lowell Sun, Sentinel and Enterprise, NH Business Review, and spoke on a podcast about the importance of transparency in billing practices in Down to Business. We also worked on efforts in relation to Inflation Reduction Act (IRA) corrections, Prescription Advisory Boards, Medical Nutrition Equity and Biomarker testing and Genetic Counseling support. Rare New England will continue to provide not only resources and community, but stand up for patients to policy decision-makers.
Rare Connections, our monthly support groups, continued to happen on the 1st and 2nd Tuesdays of every month. This is an open forum for rare disease patients and caregivers to come and share their experiences with others. This year, Rare Connections is expanding to include guest speakers on important topics to improve quality of life, like stress reduction and resilience, providing even more opportunities for patients and caregivers to connect and gain valuable support.
Our yearly conference, hosted by Jackson Labs in CT,Rare Together: Uniting for Progressfeatured two-tracks, patient/caregiver and practitioner for the first time. We wanted to accommodate for the wide variety of perspectives and interests. Our keynote speaker Rich Horgan, President & CEO of Cure Rare Disease and many other knowledgeable speakers brought together a combination of expertise. Our goal was for participants to come out with not only lessons learned, but actions to take forth into their daily lives and communities. Next year, we will continue these lessons in action with two hands-on conferences in new regional areas of NH and RI. The 2025 Rare New England Annual Conference will empower the rare disease community through hands-on workshops, roundtable discussions, and networking opportunities focused on advocacy, emergency preparedness, and homecare support.