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Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

Last year, I wrote about the possibility of telemedicine visits for Huntington’s patients with the Huntington’s Disease Society of America’s Center of Excellence in Chicago. My wife, Jill, and I were excited about this possibility because she has “white coat syndrome.” As someone who has witnessed Jill’s anxiety,…

I have been working from home since March and likely will continue to do so until next summer. Persephone, my first cat, has loved this. She’s always been pretty needy, mostly because of her extreme fear of missing out. Anytime my boyfriend or I shut the…

If you could go anywhere on vacation, would you take your time planning the perfect trip? Would you look at all of the travel websites in hopes of finding the most interesting places to go? Would you spend large amounts of money to see all of the typical tourist attractions?…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

Ever since my wife, Jill, and our daughter were tested and diagnosed as gene positive for Huntington’s disease, I have been impressed with their positive attitudes and outlook for their future. Today I realized their attitudes are the long-standing views of their family. I realized this after Jill spoke…

I spent about two months weighing the pros and cons of getting bangs again. On one hand, bangs work well with the shape of my face and eyes. On the other, I’d have to wash them every morning. They’re are a lot of work, and getting them is a commitment…

What makes a great marriage? That age-old question has been the subject of many books over the years, hundreds of talk shows, and millions of arguments. Money, especially fighting about how much to spend, is always a big topic. Many think that if you are an active listener,…

Did you ever watch cartoons when you were young? One of my favorites as a child was “Scooby-Doo,” an animated cartoon series that featured teenagers Fred, Daphne, Velma, and Shaggy. They also had a talking brown Great Dane named Scooby-Doo. This motley crew of mystery-solvers would travel from town…

If you think adulting is hard, wait until you are empty nesting. My wife, Jill, and I have a daughter who lives in the Northeast. Five years ago, she graduated from high school and went to experience college life at MIT in Cambridge, Massachusetts. We are proud of…