West Virginia
 Advisory Council on Rare Diseases
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West Virginia
 Advisory Council on Rare Diseases

  • Home
  • About Us
  • Newborn Screenings
  • Rare Disease Survey
Tell us about yourself...

The Survey

We want to know what rare disease patients and their families in West Virginia need. Please take our survey, hosted by WVU, to help us better understand your journey with rare disease.

Take the Survey

This survey is research conducted by the Rare Disease Council, with exempt approval by the Institutional Review Board (IRB) at West Virginia University. The survey is voluntary and all results are anonymous.

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WV Advisory Council on Rare Diseases

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