Wednesday, May 16, 2018

"Join Us Tomorrow! Rare Disease Capitol Hill Briefings" for Wednesday, 16 May 2018 - The National Alliance for Caregiving in Bethesda, Maryland, United States

"Join Us Tomorrow! Rare Disease Capitol Hill Briefings" for Wednesday, 16 May 2018 - The National Alliance for Caregiving in Bethesda, Maryland, United States
Join Us: Rare Disease Capitol Hill Briefings
Tomorrow, Thursday, May 17, 2018 | Washington, DC
7:30 AM (House Briefing) and 9:00 AM (Senate Briefing)
The National Alliance for Caregiving, in collaboration with Global Genes, invites you to attend policy briefings on the recently released research study, Rare Disease Caregiving in America. This important new study captures the experiences of more than 1,400 family caregivers of children and adults with a rare disease, condition, or disorder across 400 different diseases. Read the full report HERE.
These two briefings will explore policy recommendations and will highlight the unique challenges facing rare disease caregivers across the United States. Speakers include:
C. Grace Whiting, JD, President & CEO, National Alliance for Caregiving
  • Lisa Weber-Raley, MA, Vice President, Greenwald & Associates
  • Angie Rowe, MS, Chief Financial Officer, Global Genes
  • Gay Grossman, Patient Advocate, Co-founder of ADCY5.org, and Director of Patient Engagement for Neurogene LLC
  • Emily Bell, Patient Advocate, Co-founder of Bow Foundation
  • Maria Quiban, Patient Advocate, KTTV Weather Anchor
  • Representative Michelle Lujan Grisham (D-NM)
  • Senator Joni Ernst (R-IA)Register for the House Briefing HERE.
Register for the Senate Briefing HERE.
Send your caregiving news and events to 
National Alliance for Caregiving
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