Rare Patient Voice conducted a survey with n=1001 patients and caregivers to learn about the social and emotional impact of Rare Diseases. Below is a summary of results:
- Rare diseases affect many facets of the lives of patients and caregivers.
- The time required for dealing with their loved one’s disease takes away from personal and family activities and interactions.
- The emotional impact of rare disease is particularly high, with relatively more caregivers feeling anxiety, and more patients feeling depressed.
- The financial status of many families has been negatively affected, forcing many patients and caregivers to forego employment and educational opportunities, and to work part-time instead of full time.
- Lack of rare disease knowledge by many healthcare professionals and lack of awareness by others is a source of frustration to many patients and caregivers.
- Most patients and caregivers don’t feel the Affordable Care Act has made a difference in their care.
For more information about this study, please contact Wes Michael (firstname.lastname@example.org) or Pam Cusick (email@example.com).