Lani Knutson, Advocacy Team LeaderDec 5, 20192 minRare Disease Week 2020If you plan to attend, your next steps are: Read Rob Sunris' blog post on last year's Rare Disease Week. Attend the Information Webinar...
Cure CMDNov 26, 20192 min2020 Rare Disease Week: Join the TeamAs part of the rare disease community, we are all advocates. We push for inclusion and accommodations at schools, teach our doctors...
Cure CMDNov 16, 20191 minAttention Content Creators: Introducing Cure CMD’s Community Blog Initiative: For You, by YouAs you know, 2019 has been a big year for the CMD community. As 2019 SciFam recedes from view, we’re gathering the lessons we’ve learned...
Terry SeluckyNov 15, 20192 minLiam: A Rare College ExperienceLiam Miller is a 21-year-old Computer Science major in his final year at Temple University. Like many 20-somethings, Liam lives on his...
Cure CMDNov 12, 20196 min2019 SciFam Lay Summary: Stronger TogetherA “Triad” of patient advocacy organizations for ultra-rare congenital muscular diseases, Cure CMD (Congenital Muscular Dystrophy), A...
Lani Knutson, Advocacy Team LeaderNov 11, 20193 minRare Disease Week November 2020Rare Disease Week on Capitol Hill is February 25-28, 2020. The Cure CMD Advocacy Team is looking for more members to attend. Want to join...
Terry SeluckyNov 1, 20195 minMeet Veronica Pini: Researcher, Community Member“I’m a very curious person,” says Veronica Pini, PhD student who stands just under five feet tall with long blond hair. Her...