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National Alliance for Caregiving Survey

in Rick Rader MD, Info Blast

AADMD INFO BLAST - For AADMD Members and Friends

AADMD members and friends are asked to disseminate the news about this NAC survey.

Rick Rader, MD
AADMD VP of Policy and Advocacy


The purpose of the survey is to study the impact of a rare disease on unpaid friends and family members who are the care providers. This 'first of its kind' national snapshot of rare disease caregivers was launched on September 13, 2017 by the National Alliance for Caregiving and Global Genes. Our goal is to collect feedback from over 1,000 caregivers of children and adults with rare diseases.

The survey is now live at through October 31, 2017. We are aiming for 1,000+ respondents in a variety of rare diseases and conditions. To date, over 300 caregivers have responded; we need 700 to reach our minimum target.

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