{"id":277331,"date":"2025-03-11T12:14:46","date_gmt":"2025-03-11T16:14:46","guid":{"rendered":"https:\/\/rarediseases.org\/?p=277331"},"modified":"2025-12-02T16:49:45","modified_gmt":"2025-12-02T21:49:45","slug":"highlights-from-rare-disease-day-2025","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/highlights-from-rare-disease-day-2025\/","title":{"rendered":"Highlights from Rare Disease Day 2025"},"content":{"rendered":"
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From parachuting zebras to “Wicked” stars and breaking news from the NORD\u00ae Rare Disease Centers of Excellence, we\u2019re thrilled to share our favorite moments from Rare Disease Day 2025!<\/p>\n

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At the National Organization for Rare Disorders (NORD\u00ae), Rare Disease Day\u00ae<\/a> is our favorite day of the year because we get to see so many of you proudly Show Your Stripes\u00ae together, reminding us just how special this community is. This year was no exception.<\/div>\n
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The Theodore Roosevelt Executive and Legislative Building in Mineola, N.Y.<\/figcaption><\/figure>\n<\/div>\n<\/div>\n
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We were WOWED by how many events were hosted this year \u2014 more than 100! \u2014 in every region of the country, from schools to hospitals to state capitols. Together, we are living proof that rare is not rare, it is everywhere. That proof was on display all around the U.S.<\/b><\/div>\n
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Patient advocates at the Rare Disease Institute at Children’s National Hospital, a NORD\u00ae Rare Disease Center of Excellence<\/figcaption><\/figure>\n<\/div>\n<\/div>\n

Your Impact<\/h3>\n
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Rare Disease Day isn’t just a day for celebration \u2014 it’s a time for action. This year, you put actions behind your words and encouraged others to do the same, making a major difference for rare disease awareness and care.<\/p>\n

You sent 7,000 emails to representatives and senators in Congress<\/b>, urging them to protect Medicaid and pass critical legislation<\/a> that would improve access to quality rare disease care. These action alerts are still active for anyone who hasn’t sent their message yet! Take action here.<\/a><\/b><\/p>\n<\/div>\n

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Rare disease advocates overseeing Vermont Gov. Phil Scott’s signing of this year’s Rare Disease Day proclamation as part of their lobby day to support the bill to create a VT Rare Disease Advisory Council (RDAC)<\/figcaption><\/figure>\n<\/div>\n<\/div>\n
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Members of NORD’s Rare Action Network\u00ae (RAN)<\/a> \u2014 our national community of volunteer advocates with chapters in every state \u2014 met with governors and state representatives all the way from Vermont to Arizona, securing their participation on Rare Disease Day and reinforcing our call for every state to establish a rare disease advisory council (RDAC)<\/a>.<\/p>\n

Because of these volunteers’ passion and visibility, on Rare Disease Day alone, 350 more people decided to join the Rare Action Network!<\/b> If you’re not a member of this network yet, learn more and join here<\/a>.<\/p>\n<\/div>\n

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Rare disease advocates posing with New York state Sens. Persaud and Murray as part of their lobby day to support the bill to create a NY Rare Disease Advisory Council (RDAC), sponsored by Sen. Persaud<\/figcaption><\/figure>\n<\/div>\n<\/div>\n
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More than 300 people decided to further rare disease research and care by enrolling in NORD’s Living Rare Study<\/a><\/b>, the largest and most robust, online rare disease research study in the U.S. created to gather information about everyday life with a rare disease. The study aims to recruit thousands of patients and\/or caregivers who will share their lived experiences and challenges over the course of several years. The data will be used to shape NORD programming, inform national and local policy decisions, and support increased access to resources that improve quality of life. The survey is mobile-friendly and can be taken on the go. Visit: livingrarestudy.org<\/a>.<\/p>\n<\/div>\n

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And that’s not all. When we issued a call for Rare Disease Day donations<\/a>, to be matched dollar-for dollar up to $40,000 by Paramount Pictures, you spread the word to your networks and succeeded in getting us to our goal, and then some. Thanks to you, we were able to raise more than $91,000 for NORD!<\/b><\/p>\n

A crucial part of NORD’s mission is to provide financial assistance to patients to help them afford the care they need \u2014 which can come at a cost three-to-five times higher than for non-rare patients. This Rare Disease Day, you allowed NORD to continue providing this much-needed assistance.<\/p>\n

The majority of donations came from people who had never given to NORD before, which means you succeeded in helping us expand the reach of our cause by inviting friends and neighbors to show up for us. On behalf of our patient community that relies on assistance from NORD, thank you.<\/p>\n<\/div>\n

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Rare disease advocate Orezont Ragans of VOCAL-NY and VOCALRochester joined our New York lobby day<\/figcaption><\/figure>\n<\/div>\n<\/div>\n

Our Favorite Videos<\/h3>\n
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So many people heeded our call to #ShowYourStripes<\/b>, including some familiar faces!<\/p>\n

We were overjoyed to see 6-year-old “Wicked” actor Cesily Collette, who plays young Nessarose, Elphaba’s younger sister in the new film<\/b>, happily showing her stripes on Rare Disease Day. She lives with spina bifida<\/a>, a congenital disorder affecting the spine that impacts an estimated 166,000 Americans.<\/p>\n

Meanwhile, Beh\u00e7et’s warrior Pamela Price, founder of We Care When<\/a><\/b>, showed the world that “Rare is Strong” in a video that showcased her athleticism while explaining what it’s like to live with Beh\u00e7et’s syndrome<\/a> flare-ups.<\/p>\n

Our followers shared their own stories on our Faces of Rare dedication wall<\/a>, and we made them into a video to help share them with the world! Check it out below along with Cesily and Pamela’s videos.<\/p>\n<\/div>\n<\/div>\n

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