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July 26, 2021 Columns by Emily Wallis

One Drop Can Make an Impact: The Importance of Spreading Awareness

My favorite animals are sharks. They’ve always fascinated me. An interesting fact I’ve learned is that sharks can smell blood in very small concentrations in water — as low as one part per million! As I contemplated this column, this shark fact, a Sanfilippo event I attended last month,…

February 23, 2018 News by Larry Luxner

Patient Advocacy Groups Worldwide Plan Events to Mark Rare Disease Day, Feb. 28

A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…

Recent Posts

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  • Spruce to move tralesinidase alfa into Phase 3 clinical study
  • I’m hopeful about the future of Sanfilippo syndrome type B
  • HSPC transplant eases disease symptoms in Sanfilippo C mice
  • Forever a toddler: Grieving the independent child I’d dreamed of
  • Honoring — and missing — my mother 5 years after her passing
  • FDA grants priority review to gene therapy for Sanfilippo type A
  • My daughter’s diagnosis with Sanfilippo syndrome type B
  • My sister with Sanfilippo is stable for now, so I’m taking a break
  • Feeling disconnected from my daughter as Sanfilippo progresses


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