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Blog Posts

Tag: Disease Awareness

MLD and DMD Added to the Federal RUSP - a Victory for Newborn Screening

MLD and DMD Added to the Federal RUSP: A Victory for Newborn Screening

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...

Published December 16, 2025
2025 Rare Disease Day

2025 Rare Disease Day

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...

Published February 28, 2025
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