Skip to content
Sanfilippo Syndrome News logo
  • About Sanfilippo
    What is Sanfilippo?
    Types
    Causes
    Symptoms
    Diagnosis
  • News
  • Columns
    Parenting a Sanfilippo Child — Kelly Wallis
    Saving Liv — Erin Stoop
    Archived columns
    • Finding My Peace with Sanfilippo — Emily Wallis
    • Plot Twist — Valerie Tharp Byers
  • Health insights
  • What can we help you find today?

September 2, 2021 News by Shayna Korol

‘Running for Rare’: NORD a Charity Partner of 2021 NYC Marathon

The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both in-person and online. “Supporting charitable causes and organizations are a long-standing tradition of the TCS New York City…

Recent Posts

  • Balancing logic and emotion isn’t easy as a Sanfilippo parent
  • 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


Envelope icon

Subscribe to our newsletter

Get regular updates to your inbox.

Bionews, Inc.

3 W Garden St
Suite 700
Pensacola, FL 32502
Website: bionews.com
Email: info@bionews.com
Phone: 1-800-936-1363

  • About Us
  • Leadership
  • Our Culture
  • Editorial Policy
  • Advertising Policy
  • Corrections Policy
  • Terms of Service
  • Privacy Policy
  • Careers
  • Contact Us
Disclaimer

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Copyright © 2013-2025 All rights reserved.