by Naz Dana | Oct 4, 2018 | Rare Diseases |
The Global Genes 2018 RARE Patient Advocacy Summit – one of the key events in the rare disease world – wraps up today. As the largest worldwide gathering of rare disease patients, advocates, and thought leaders, the summit brought together over 100 experts, who led...
by Ethan Perlstein | Jul 21, 2016 | Blogposts, Science |
Last month I traveled to Tucson for my third consecutive Ara Parseghian Medical Research Foundation meeting for Niemann-Pick Type C/NPC. In 2014 at my first APMRF meeting, which was hosted in South Bend at Notre Dame University, I was a newcomer to the NPC community...