Today brings exciting news for the rare disease community, born from immense effort, patient advocacy, and a refusal to back down. In a historic move, Metachromatic Leukodystrophy (MLD) and Duchenne...
It’s Rare Disease Day and we at Patient Advocacy Strategies were puzzled and disappointed by the ‘postponement’ of this year’s FDA/NIH Rare Disease Day amidst the current political turmoil. The...