Researchers have identified more than 7,000 rare diseases and few have approved treatments – a cause that brings together patients, researchers and advocates of all kinds on Rare Disease Day.
New to Rare Disease Day? It’s held on the last day of February, which this year is February 28 but it sometimes falls on February 29, Leap Day, the rarest day of all. Ordinarily, in-person events allow people to join together in person for events and educational meetings. This year, just about everything is virtual, but it means you can learn more about rare diseases from wherever you are.
1. Attend an online event. Here are three to choose from:
February 28 – The National Hemophilia Foundation’s virtual book launch party
NHF President and CEO Dr. Len Valentino, reads the first chapter of Super Seven, a new book for children who have rare bleeding disorders.
March 1 – Rare Disease Day at the U.S. National Institutes of Health
The National Center for Advancing Translational Sciences and the NIH Clinical Center annually invite rare disease researchers and patients to join together for a full day of presentations and discussions at the NIH campus in Bethesda, Maryland. This year’s virtual event will include interactive panel discussions and TED-style talks to share the latest research and give patients a platform to share their stories. The event begins at 10:30 EST.
March 5 - Rare Disease Day at the U.S. Food and Drug Administration
The FDA will hold a virtual public meeting to "highlight strategies to support rare disease product development." The agency invites patients, patient advocates, researchers and medical product developers to attend. Topics will include patient engagement, natural history studies in rare disease product development and strategies to support the development of rare disease treatments during the COVID-19 pandemic.
3. Find some joy in Rare Disease Day. Our final suggestion comes from someone who knows about rare diseases firsthand. Melaine Zeigler spent decades searching for answers about her worsening health before finally learning she had a primary immunodeficiency (PI). Immune system problems like Zeigler’s make her more prone to serious infections, but treatments are available. Think of Rare Disease Day as a day of celebration, she said.
“We all have a choice on how we reframe our situation and, when you have a rare disease, sometimes all you can change about it is how you think about it,” Zeigler said. “I think spending a day doing something to celebrate would be great.”