In the United States, a rare condition is defined as one affecting fewer than 200,000 people nationwide. But when you consider how many people actually live with a rare condition,…
In 2015, rare disease stakeholders in North Carolina established the first Rare Disease Advisory Council (RDAC); the National Organization for Rare Disorders (NORD) explains that an RDAC is an…
At the end of May, 2022, the Governor of Connecticut, Ned Lamont, established a permanent Rare Disease Advisory Council (RDAC) for the state by signing House Bill 5500 (HB 5500).…
Advocacy is an extremely important part of supporting and helping the rare disease community. A big part of this is rare disease advisory councils (RDACs), which are governmental groups comprised…
Because of their rarity, rare diseases often aren't considered or represented in the government. But state by state, we are slowly gaining representation within the legal system. This is being…
Guadalupe Hayes-Mota has worked for Biogen, Ultragenyx, Amgen, and GSK. He was the prior UCLA Health Director. Additionally, he is a member of the Massachusetts Rare Disease Advisory Council. He…
Tom Kean, the Senate Republican Majority Leader in New Jersey, is leading the charge to fully realize a recently partially approved bill, which would create a New Jersey Rare Disease…
Last year, 92.7 WOBM reporter Vin Ebenau sat down with Allie and Jonna Crocker, two sisters who live around the Jersey Shore, to discuss their experience with rare diseases. The…
According to a story from Charcot-Marie-Tooth News, the National Organization for Rare Disorders (NORD) is beginning a new initiative that will be the focus of a public virtual meeting that…
According to a release on Public News Service, the state of West Virginia just implemented a new bipartisan law to support individuals with rare diseases and their families, a particular…
Sometimes through tragedy and hard times, a beacon of hope can emerge. After months of struggling with a rare aggressive disease, toddler Chloe Barnes passed away in 2008 in Minnesota.…
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