Rare Caregiving in America: Policy Briefings on First-of-its-Kind Study Uncovering Impact of Rare Disease on Family Caregivers

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National Alliance for Caregiving and Global Genes to Host Capitol Hill Briefings on May 17

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Join the Rare Disease Capitol Hill Briefing

The National Alliance for Caregiving, in collaboration with Global Genes, will host policy briefings on the recently released research study, Rare Disease Caregiving in America on Thursday, May 17 on Capitol Hill.

The National Alliance for Caregiving, in collaboration with Global Genes, will host 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, facing emotional, financial, physical, and social strain with little support from outside resources. Report authors, caregivers and policymakers will share the findings, as well as personal experiences and policy recommendations.

Thursday, May 17, 2018

7:30 am – 9:00 am
Rayburn House Office Building, Room 2044
45 Independence Avenue, SW
Washington, DC

9:00 am – 10:30 am
Dirksen Senate Office Building, Room 562
2nd Street, NE
Washington, DC


  • U.S. Senator Joni Ernst (R-IA)
  • U.S. Representative Michelle Lujan Grisham (D-NM)
  • C. Grace Whiting, JD*, President & CEO, National Alliance for Caregiving
  • Lisa Weber-Raley, MA*, 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, Caregiver, Co-Founder of Bow Foundation, focused on GNAO1 disorder
  • Maria Quiban*, FOX's Good Day LA Morning Anchor and Global Genes Ambassador

*Available for media prior to and following the events.


About the National Alliance for Caregiving
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conduct research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance supports a network of more than 80 state and local caregiving coalitions and serves as Secretariat for the International Alliance of Carer Organizations (IACO). Learn more at http://www.caregiving.org.

About Global Genes
Global Genes is a leading rare disease patient advocacy organization whose mission is to connect, empower, and inspire the rare disease community. With an international scope, Global Genes develops educational resources, programs, and events that unite patients, advocates, and industry experts. Committed to fostering these meaningful connections, Global Genes is driven to catalyze therapeutics and cures for the estimated 7,000 rare diseases that impact approximately 1 in 10 Americans, and 350 million people worldwide. For more information, please visit Global Genes and follow @GlobalGenes on social media to join the RARE conversation! Learn more at https://globalgenes.org/.

About Greenwald and Associates
Greenwald & Associates is a full-service custom research firm, specializing in the areas of healthcare, financial services, and employee benefits. Learn more at http://greenwaldresearch.com/.


This event will be held in strict accordance with House and Senate Ethics rules. Food and refreshments of a nominal value will be provided as allowed by House Rule 25, clause 5(a)(4)(A) and Senate Rule 35.1(d)(1).

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Nicole Beckstrand
Chandler Chicco Agency, a Syneos Health company
+1 858 431 9611
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Jennifer Spangler
National Alliance for Caregiving
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