CHARLESTON, W.Va. – The West Virginia Advisory Council on Rare Diseases seeks survey participants to help identify the extent of rare diseases in West Virginia. Survey results will be used to improve quality of care and to advise state agencies on research, diagnosis, treatment, and educational needs relating to rare diseases.
A rare disease is defined as any disease which affects fewer than 200,000 people in the United States and is known to be substantially under-diagnosed and unrecognized as a result of the lack of adequate diagnostic and research information, including diseases known as “orphan diseases” for research purposes. The council was created by the passage of Senate Bill 269 in March 2020 and is composed of medical and public health professionals, community advocates, and community members with experience in rare diseases.
“By completing this survey, West Virginia will be better positioned to assist those living with a rare disease,” said Fernando Andrzejevski, advisory council chair. “We are asking West Virginians affected by rare diseases to complete the survey as soon as possible to help us better understand demographics, progression and treatment, availability and quality of care, and other needed resources.”
The West Virginia Department of Health and Human Resources provides administrative support to the West Virginia Advisory Council on Rare Diseases to carry out its duties and to receive, accept or secure gifts, grants and bequests of funds.