Rare Disease Legislative Advocates & the National MPS Society in coordination with Rare Disease Congressional Caucus Co-Chairs:
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing on:
Urgent Healthcare Policy Needs of the Rare Disease Community

Thursday, February 26th, 2015
12:00 noon – 1:00 pm
Congressional Visitors Center (CVC) Room TBA 
RSVP to Receive Updated Room Information

Lunch Provided by event sponsors AbbVie, Alexion, Raptor, & Shire

Moderator:  Anthony J. Castaldo, President, US Hereditary Angioedema Association (HAEA)

  • Limited Access to Specialists in Private Insurance Networks, Stephanie Bozarth, National MPS Society
  • Coverage Gaps for Medically Necessary Foods, Nicole Dreyer-Gavin, PKU Parent Advocate
  • Medicare Coverage Challenges for Cystinosis Patients, Kristina Broadbelt, Patient Advocate
  • Step-wise Therapies: Negative Implications for the Health of Rare Disease Patients, Anthony J. Castaldo, President, (HAEA)