The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both in-person and online. “Supporting charitable causes and organizations are a long-standing tradition of the TCS New York City…
In late July, before my nephew, Dylan, moved to the Georgian capital of Tbilisi, in the Caucasus region, for several months, I played several songs for him while we were in his car. One of them was a live version of “Fragile” by Sting. I know Dylan’s taste…
Getting a new treatment to people with rare conditions like Huntington’s disease is difficult. It takes lots of intelligence about a specific topic and immense time and energy. It requires funding to fuel the time and energy of those intelligent people. It depends upon a correct hypothesis that is executed…
The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…
Huntington’s is a strange and deadly disease. It’s not like cancer. Only 5-10% of cancer is hereditary, and what’s passed down is the abnormal gene that can lead to cancer, not the cancer itself. It’s not like heart disease. Certain risk factors, such as high cholesterol, can be…
Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…
For more than two years, I have shared my family’s journey with Huntington’s, including learning about the disease, living through my wife and daughter testing gene-positive, and working to accept their diagnoses. This time, I want to share some advice from Jill, my wife: Let go of people who are…
Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…
A soundtrack has been playing in the back of my mind for weeks now, ever since I last saw my wife, Jill. Following are some of the songs that have been on my mental playlist: “So Far Away” by Dire Straits “So Far Away” by Carole King (different…
More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…
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