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Wild Zebras Running Free: Rare Disease Day 2023

“Look for horses, not zebras.” That’s what doctors often teach in medical school to those learning how to diagnose illnesses. Looking for the rare disease comes later. First, they are told to look at the obvious. This is part of why most histio warriors have such a long and draining journey to even get a diagnosis.

We celebrate Rare Disease Day every year on the rarest of non-leap days, February 28th. It is a day meant to bring awareness to physicians and medical professionals alike. To look toward the “zebras” – that rare disease warriors know all too well.

In this Executive Director’s Letter, I will be going through some of the events and awareness campaigns hosted by the Association, and others in the rare disease advocacy field.

One event that I wanted to highlight is the NIH Rare Disease Day stream, on 9am-5pm EST on February 28th. This stream will highlight NIH-supported research into rare diseases and the development of new diagnostics and treatments, as well as highlighting the voices of rare disease patients and advocates. It is an honor to have rare on this stage and platform and show the progress all of our efforts have made, to bring attention and awareness to our causes.

The Association

Firstly, we would love to highlight what we at the Association are doing for this year’s Rare Disease Week.

You can share your stories with us through this link or with #ShareYourRare. Additionally, we would love to see people sharing pictures showing off their stripes. Blue and green, black and white, blue and black or white and gold. Whatever you see fit. Remember to tag us on the post or story.

In addition to sharing stories of histio warriors, and why the rarity of their disease matters to them, we will also be hosting a fundraiser.

Our fundraiser, We Care About Rare, will start on the 21st, next Tuesday. We are encouraging everyone who can, to give a minimum of $28 for Rare Disease Day.

We will enter anyone who donates $28 or above into a drawing to win a histio awareness prize kit valued at $100.

Our goal is to raise $2800 by the end of the month.


National Organization for Rare Disease

The best partnering organization to start with is NORD – the National Organization for Rare Diseases, the founder of Rare Disease Day.

For 40 years, since the passing of the Orphan Drug Act, NORD has been advocating for all rare diseases in the United States. February is a month of special focus for them as it is Rare Disease Month.

This year, NORD is asking the community to submit ideas for how they reimagine rare in the #ReImagineRare campaign through social media. They are also conducting a separate Rare Disease Day campaign with facts, figures, community testimony and more on their social media. You can view it all and share your rare with them here: Twitter, Facebook, Instagram, LinkedIn.

Finally, NORD has organized a campaign based around lighting up building across the US in the Rare Disease Day colors called Light Up for Rare. You can find out more and share what building or monument you are trying to or have been able to light up here.

Global Genes

Global Genes is an organization dedicated to advocating for rare disease, especially for those rare diseases which are genetic. Over the years, they have helped to educate over 75,000 advocates on behalf of rare diseases.

This year, they will be sharing rare disease stats and awareness through their social media. You can participate too, by sharing your rare disease story and adding a special Rare Disease Day photo to your profile picture.

Tag @GlobalGenes on social media and use the hashtag #CareAboutRare to participate.

You can also share any virtual event, community fundraiser or conference you are having for Rare Disease Day on their Events Hub so it’s shared with others in the rare disease community.

EveryLife Foundation

Lastly, for Rare Disease Week, the EveryLife Foundation is hosting its annual Rare Disease Week on Capitol Hill.

Run by the Rare Disease Legislative Advocates, this multi-day event will gather rare disease advocates from all over the country in Washington D.C. to enable advocacy efforts with congressional representatives.

There, they will educate participants on policy proposals impacting rare disease and its communities. Participants will then have opportunities to advocate for changes in those policies with their congressional representatives.

All are welcome, no matter their advocacy experience level.

Educational events are available virtually as well. Congressional meetings are only available in person, however.

You can find all EveryLife’s Rare Disease Week events here.

United in Rare Together

I want to sincerely thank everyone who has partnered with us in sharing this extensive list of Rare Disease Month, Week and Day events.

We are so excited to start!!

Get out there and show your stripes!!!