What does Policy and Advocacy look like in our KIF1A community?
It means advocating for treatment development, improving access to care, federal funding, and healthcare services. It means engaging patients and families in legislative discussions and regulatory initiatives. It means empowering and shining a light on patient voices and experiences. We are a community of change-makers. And we’re ready to fight.
Read on below to hear the story KIF1A Policy and Advocacy in action during Rare Disease Week 2026.
What is Rare Disease Week?
As a lead up to Rare Disease Day on February 28, the Everylife Foundation for Rare Diseases hosts Rare Disease Week in Washington D.C. on Capital Hill. With over 165 patient advocacy organizations participating, this multi-day event “brings together rare disease advocates from across the country to make their voices heard with their Members of Congress”. Everylife Rare Disease Week is hosted by their Rare Disease Legislative Advocates program, focused on supporting advocacy of all rare disease patients and organizations.
Rare Disease Week presents many opportunities for patient advocacy and community engagement including receptions, community meet ups, legislative conferences, and meetings with legislators. With emphasis on sharing patient stories and backed by powerful corporate sponsors, the Everylife Foundation for Rare Disease centers the patient voice in United States policy and advocacy spaces in an impactful and meaningful way.
KIF1A.ORG On the Hill for Rare Disease Week 2026!
We were honored to have Naomi McMackin, KIF1A parent, physician, and long-term policy and advocacy volunteer, represent KIF1A.ORG at Rare Disease Week 2026. Naomi engaged with multiple stakeholders and community members while bringing the KIF1A community experience to the forefront of key legislative topics.
The conference was wonderful. I was blown away by the community of advocates that showed up with such passion to hold our legislators, policy makers and governmental agencies accountable to the rare disease community.
-Naomi McMackin on Rare Disease Week 2026
Through various sessions during Rare Disease Week, Naomi fostered personal connection through face-to-face interaction. She met with staffers for McCormick (R-PA), Fetterman (D-PA) and Fitzpatrick (R-PA) to discuss rare disease priorities. With Fitzpatrick being an established rare disease champion, Naomi expressed gratitude for his support and emplored him to fund the Rare Disease Innovation Hub during this appropriations cycle. Fetterman and McCormick are not members of the Rare Disease Caucus, thus Naomi and others executed a call to action by asking them to do so, especially after hearing impactful stories from their PA constituents and learning about how the FDA could better support our community.
The high point of the week for Naomi was meeting many Young Adult Rare Representatives (YARRs). YARRs are defined as engaged rare disease community members between 16 and 30 years of age who are the face of the future and next generation of rare disease advocates. Naomi highlights that this is a great opportunity for patients, siblings and anyone who has a connection to our KAND community. Naomi’s nephew, Benjamin McMackin, will start the YARR Leadership Academy this summer!
Naomi attended the Senate Committee on Aging Hearing, From Regulator to Roadblock: How the FDA Bureaucracy Stifles Innovation and heard critical testimony on how the FDA has rejected applications for therapeutics without the standard of holding open public and advisory meetings. This testimony highlights how this behavior is deleterious to the communities that are most impacted and the clinicians and scientists that know their disease best. This was a very powerful hearing and we encourage you all to watch in your own time.
Moving Momentum Forward – What’s Next?
While experiencing many positive moments and connections at Rare Disease Week, Naomi brings home an important observation for our KIF1A community: KAND and KIF1A.ORG were still unknown to most of the people Naomi met with. Let us all take this observation as a call to action and an opportunity to rise to an ever present challenge. How do we use our voices in strategic ways to make our presence known as a community?
No effort is too small in trying to achieve this goal. Wear a KIF1A.ORG bracelet to strike up conversation at the supermarket. Share your story with family, friends, and other advocates. Reach out to the KIF1A.ORG team with questions, ideas, and feedback. Or join us as we advocate for pieces of legislation in the name of our community members.
In 2026, KIF1A.ORG will continue our policy and advocacy efforts, aligned heavily with the Rare Disease Legislative Advocates program around the topics of:
- Credit for Caring Act (S.925/H.R. 2036)
- Genomic Answers for Children’s Health Act (H.R. 7118)
- Rare disease treatment pipelines
- And more!
Want to get involved? Here are two ways to take action NOW and advocate for our KIF1A community:
- Contribute to our KIF1A.ORG Policy and Advocacy Community Storybook.
- Write a letter to your state or federal representative about an issue! For more information and suggested text, please visit the FAQ section of our Policy and Advocacy page.
We look forward to keeping you informed every step of the way, sharing experiences and stories of our great advocates like Naomi as we work towards a strong future for our KIF1A community. Thank you to Naomi for your continued advocacy and sharing your experiences from Rare Disease Week 2026!
