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To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

My wife, Jill, has diagnosed me with attention deficit hyperactivity disorder (ADHD). (Look! A squirrel!) For the record, she is not a doctor, though she wishes she could play one on television. All joking aside, Jill has this uncanny ability to identify people’s issues. I remember the first time…

I’ve been a part of the Huntington’s disease (HD) community since my mom was diagnosed in 1995. I was 9 at the time. The gene mutation responsible for the disease had been discovered two years earlier, and community leaders were excited about the potential of the discovery to lead…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

In early May, cybercriminals known as DarkSide launched a devastating ransomware attack on Colonial Pipeline, one of the United States’ largest pipeline systems for refined oil products, which transports around 100 million gallons of fuel daily between Texas and New York. This attack reminded me of Huntington’s disease.

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

The school year recently ended, which may be good for students and teachers, but not for my wife, Jill. The last week of school is a lot like walking through a car wash for her. Because she is the school secretary, she still works a lot as everyone else winds…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

Last weekend, I had a bunch of newly vaccinated friends over to help me paint my new condo. My partner and I had just closed on it two days earlier, and I was excited to make the place feel like our own. We finished the entire condo in…

My wife, Jill, and her phone are like Siamese twins — attached all the time. At least, that’s how it seems. Jill, who has Huntington’s disease (HD), stares into her phone for hours when we are at home, playing puzzle, tile, and problem-solving games such as Tile Master,…