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Rareness Creating Awareness – Rare Disease Day 2024 Recap

The NORD graphic we shared for Rare Disease Day

This Rare Disease Day was the rarest of all. It was on one that fell on a Leap Day. Given this occasion, we went all out for Rare Disease Day this year.

We shared our stripes through NORD’s template for Rare Disease Day, which sparked dozens of Facebook posts and Instagram stories from people tagging us and sharing their own histio journeys.

A screengrab from our “We are rare” video

Then, we premiered a video to our community that we aired back in October in airports all over the US. Our “We Are Rare” commercial was seen by around 60,000 people on October 1st during an NFL game of Chiefs @ Jets game and was shared 29 times from social media.

Our Community

Histio Ambassador Suzanne

Throughout our staff, ambassadors, and wider community, it was a very fruitful Rare Disease Day. Our Outreach Coordinator, Allie, shared Youth Ambassador Avalon’s Volunteer Spotlight from our most recent newsletter with her high school, and they are considering it to be featured in their own newsletter!

One of our Histio Ambassadors, Suzanne, received an award, a Paul Harris Fellowship, from her local Rotary Club for her service as a Rare Disease Advocate. She appropriately showed up in striped clothing.

Other Organizations’ Contributions

In addition to our contributions and those of our community, a lot was done in the wider healthcare and non-profit world to bring attention to rare disease. National Institutes of Health (NIH) held a Rare Disease Day Event on Thursday. During the Energy and Commerce Hearing, there were conversations held about the Inflation Reduction Act (IRA), which has impacted rare disease drug development in a number of ways. The Histiocytosis Association partnered with many other rare disease organizations through EveryLife Foundation to share our concerns and hopes for changes. 

There was robust discussion about the IRA proposals included in the hearing agenda. The discussion showed that there is some hesitation to changing details of the IRA, but the repeated mentions of moving rare disease solutions forward in a bipartisan way offered hope for our collective effort to secure the two technical fixes we supported the proposal for/of.

EveryLife Foundation remains committed to working with the Committee and Congressional champions to seek these changes this year and will update the HA and other organizations as well as share any opportunities for us to get involved. If you would like to view the hearing recording, it can be accessed here

Until next year, we will keep fighting for our rare disease, histio, as fervently as ever, and hope to keep the spotlight on it and others until February 28th rolls around again.