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Posts by category

• Category: Advocacy Organizations
  • PA Rare Disease Leader Profile: Dr. David Fajgenbaum of the Castleman Disease Collaborative Network
  • PA Rare Disease Leader Profile: Dr. Nicole Henwood of NF2 BioSolutions
  • PA Rare Disease Leader Profile: Leah Schust Myers of FamilieSCN2A Foundation
  • PA Rare Disease Leader Profile: Joe Coyne of Garrett the Grand – Batten Fighter
  • PA Rare Disease Leader Profile: Lisa Butler of GBS|CIDP Foundation International
  • PA Rare Disease Organization Leader Profile: Emily Kramer-Golinkoff
  • PA Rare Disease Leader Profile: Rob Long of Uplifting Athletes Inc.
  • PA Rare Disease Leader Profile: Aviva Rosenberg of Gaucher Community Alliance
  • PA Rare Disease Leader Profile: Caryl Harris of Avery’s Hope
• Category: Blog
• Category: Clinical Trials
  • Lawmakers Chosen as Co-Chairs for Pennsylvania Rare Disease Caucus
  • Tom Wolf signs bill to establish Rare Disease Advisory Council
  • Rare Disease Advisory Council Bill Moves through Pennsylvania House
• Category: Immunotherapy
• Category: Leader Profiles
• Category: Medication
• Category: News Release
  • Pennsylvania Rare Disease Advisory Council Holds Inaugural Stakeholder Summit
  • Pennsylvania Rare Disease Council Applauds Enactment of Legislation to Improve Newborn Screening
  • Pennsylvania Rare Disease Council Launches First-Of Its-Kind Needs Assessment Survey
• Category: Pennsylvania Policy
• Category: Physicians
• Category: Research Studies
  • New Report on Rare Diseases in Pennsylvania Shines Light on Patients and Significant Barriers to Diagnosis, Treatment and Insurance Coverage

Resources

• Pubmed
• MedlinePlus
• Clinicaltrials.gov
• Orphanet
• University of Pennsylvania Orphan Disease Center
• Undiagnosed Diseases Network
• RareUniversity
• Rare Action Network
• Rare Disease Day
• National Organization for Rare Disorders (NORD)
• NIH Rare Diseases Clinical Research Network
• NIH Genetic and Rare Diseases Information Center (GARD)
• Rare Foundation (formerly EveryLife Foundation)
• Global Genes