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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…

My wife, Jill, and I celebrated our wedding anniversary last month. We like to joke that we don’t keep track of the years because it seems like yesterday when we got married. Some years, as a gift, I like to write her something romantic or funny. This year, I decided…

The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…

I’ve found that having a parent with Huntington’s disease makes you value every moment with them, even in unfortunate situations. For instance, normally I wouldn’t volunteer to go on a road trip from Massachusetts to Illinois, but I would for my mother. As I’ve previously written, my mom was…

AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…

“Parting is such sweet sorrow,” Shakespeare once wrote. And don’t I know it. Recently, the big news in my home is we’re moving to the East Coast, as my wife, Jill, and I want to move closer to our daughter, who lives in Boston, and other family…