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New Year, New Advocacy Opportunities
Hello Ataxia advocates,
Welcome to 2026! We are so grateful to have you here with us this year. 2025 was a busy year for our community
- 169 ataxia advocates came together in 99 congressional meetings for NAF and FARA's annual United Against Ataxia Hill Day,
- We witnessed the longest government shutdown in U.S. history, and
- Our Senate Resolution passed, declaring September 25, 2025 as National Ataxia Awareness Day.
Looking forward to this year, there is a lot of work to do, but together we can tackle it.
We have a few updates to share about rare disease legislation and events that NAF has been part of, but first we want to highlight the upcoming Rare Disease Day and all of the surrounding advocacy opportunities that you can join. The last week of February is full of events highlighting rare disease awareness, all culminating in Rare Disease Day- a celebration of the rare disease community, and a chance to raise our collective voices across the globe.
All our best,
NAF Advocacy Team
Andrew Rosen - CEO
Lori Shogren - Community Services Director
Courtney Bockhop - Community Services Associate
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FDA Rare Disease Day
The U.S. Food and Drug Administration (FDA) is hosting an event to kick off rare disease week on February 23. This event is a great way to learn more about the work FDA is doing to advance rare disease treatments and to discover patient engagement opportunities with the FDA. NAF is working on building our relationship with the FDA. Patient voices are essential as the agency makes decisions on drug development legislation and approvals. This is a free, virtual program that anyone can sign up to participate in.
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Rare Disease Week on Capitol Hill 2026
Rare Disease Week is hosted by the EveryLife Foundation February 24-26 on Capitol Hill in Washington D.C. This is an opportunity to connect with other advocates in the rare disease community and to speak up for rare disease legislation. You would meet in-person with your Senate and House offices with a group of other rare advocates from your state. This advocacy week is not ataxia-specific, but we are hoping to have an ataxia presence in these meetings to raise awareness of ataxia and advocate for causes our community cares about. We need you and your voice to join us to make an impact!
Visit the Rare Disease Week website to learn more and to register. Reach out to Courtney at courtney@ataxia.org if you are planning on attending, so that she can coordinate our group!
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Rare Disease Day at NIH
On February 27, the NIH National Center for Advancing Translational Sciences (NCATS) is hosting an in-person and virtual gathering to celebrate rare disease research and innovations. This one-day event will include panel discussions, art exhibits, and scientific posters. The topic will focus on how NIH supports rare disease research and patients across their various programs.
Take note that this will be held in Bethesda, Maryland, just outside of Washington D.C. You can register to attend in-person or virtually below.
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Rare Disease Day 2026
Rare Disease Day is the culmination of all of these rare disease week events and will be celebrated across the globe on February 28th. This is the day for the rare disease community to speak up, gather, and raise awareness. Check out the Rare Disease Day 2026 website to find events, awareness materials, and learn more about the day.
Ways to Get Involved:
Host a get-together, in-person or virtually, with your ataxia community. You can come together to share stories, wear your Ataxia pride gear and take a walk (or roll), or post on social media to raise awareness. You can add your event to the Rare Disease Day event calendar if you are open to additional participants.
Call your legislators to advocate for rare disease policies that you care about or to urge support for increased federal medical research funding. You can call the U.S. Capitol Switchboard at 202-224-3121 to be connected to your congressional representatives.
- If you need an idea of what to advocate for, consider urging your Senators to pass the Give Kids a Chance Act (S. 932). This bill reauthorizes priority review vouchers (PRVs), which incentivize the development of new rare disease treatments!
Light Up for Rare: You can use lights, garlands, or other decorations to light up your home for rare disease visibility. The colors for Rare Disease Week are blue, purple, pink, and green. You can also engage with the Light Up campaign on a larger scale by requesting that a local building or monument be lit up on Rare Disease Day with those colors. This toolkit has helpful information for making a request. Make sure to take pictures and share them on social media using #lightupforrare.
| Throughout Rare Disease Week, share your experiences on social media and be sure to tag NAF! Whether you are able to attend an event, light up a building, or show off your rare disease solidarity, post your tribute to Rare Disease Day to raise awareness and increase understanding of ataxia and the rare community. Join us to create advocacy momentum for the new year! | | | |
Give Kids a Chance Act Passes the House Unanimously
We ended 2025 with some exciting news! In December, the House of Representatives unanimously passed the Give Kids a Chance Act (H.R. 1262/ S. 932). The Senate also attempted to pass the bill but was unable to do so unanimously. They will continue to work to get the legislation passed. This bill, as mentioned above, would incentivize rare disease drug development. Take Action today to usher this critical legislation across the finish line.
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PROTECT Rare Act Introduced in the Senate
In other good news, the PROTECT Rare Act (S. 3551) was also introduced in the Senate in December by Senators Tillis (R-NC) and Heinrich (D-NM). This legislation updates the definition of “medical necessity,” which aims to improve patients’ ability to have their medications covered by insurance. Clear standards could reduce delays and denials for rare disease patients.
The Haystack Project is collecting community thank you notes to extend gratitude to the two Senate offices.
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ABLE ACT New Age Requirements
ABLE accounts allow people with disabilities to save and invest money without losing eligibility for public benefits, like Medicare and Medicaid. There are also tax advantages and other benefits of having an ABLE account, which you can explore here. Prior requirements limited eligibility for an ABLE account to people whose disability began before age 26. As of January 1, 2026, eligibility requirements have been made more flexible to include anyone whose disability began before age 46. This means that many more people who have severe disabilities that onset later into adulthood can take advantage of these accounts. This is big news for people with ataxia, which often develops and is diagnosed past age 26.
If you are interested, visit ablenow.com to learn more.
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Federal Government Funding Deadline Looms Again
When Congress voted to reopen the government in November, they set themselves a January 30th deadline to pass the nine remaining fiscal year (FY) 2026 budget bills. Congress has passed three additional funding bills this week. This leaves six more appropriations bills that need to be passed before the January 30th deadline. Among the bills that still need to be passed are the Department of Defense and Health and Human Services funding bills, which house key programs for rare disease funding, including the CDMRP and NIH.
If Congress fails to pass these funding bills, we will either continue with FY25 funding levels or enter another shutdown. You can take action here to tell Congress to pass the HHS funding bill with an increase in NIH’s budget for medical research.
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2025 Annual Community Congress Meeting
In December, the EveryLife Foundation gathered all of the member organizations of their Community Congress in Washington D.C. for an end-of-year meeting. Community Congress membership is a valuable way for NAF to connect with other rare disease organizations and plan advocacy efforts. NAF Community Services Associate, Courtney Bockhop, represented NAF at this event alongside over 100 other patient advocates to look back on the group’s work in 2025 and ahead to the new opportunities in 2026.
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PDUFA House Briefing & Punchbowl News Conversation
Courtney also represented NAF at two other events in December. First up was the rare disease congressional caucus briefing on the Hill about the Prescription Drug User Fee Act (PDUFA), which Congress reauthorizes every five years to fund the FDA and help shape the agency’s priorities. These priorities can include crucial topics for rare disease drug development, including innovative trial design and patient-focused drug development.
| | That same day, Punchbowl News hosted a talk with Senator Collins and the Alzheimer’s Association. Senator Collins spoke about new emerging technologies and treatments, while emphasizing the importance of continued Congressional support for robust medical research funding. | | |
Annual Ataxia Conference, April 9-11, 2026
Get ready for NAF’s annual conference this April in Orlando, FL! This event is a fantastic way to connect with others in the ataxia community, find valuable resources for managing your ataxia, and learn more about new developments in ataxia research. Visit our 2026 AAC webpage for more information about the event and contact support@ataxia.org if you have any questions about travel grants or AAC.
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Check out these additional resources for help with making your voice heard and to learn more about current policy issues:
Visit Rare Disease Legislative Advocates (RDLA) for additional advocacy resources. If you would like more information about a topic or have tools to share, please contact us at naf@ataxia.org.
| | | Find Your Local Representatives: | | |
Keep In Touch
Please keep in touch with us about any advocacy that you do- we would love to highlight your work and support your efforts! Please contact Courtney, courtney@ataxia.org, with any updates you want to share with NAF.
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