In recognition of Rare Disease Day 2010, Inspire and the National Organization for Rare Disorders conducted a survey of Inspire members with rare disorders.
The results are enlightening, and I encourage you to take a look at the survey, linked at the end of this page.
Many people wrote to share additional experiences, and some of the stories I liked most were from members who had met another person with their condition for the very first time here in the community.
A few highlights: Of the 554 respondents,
- 68% have a rare disorder, and 32% are caregivers.
- 81% are female, and 19% are male.
- The average age is 47, and the median age is 48.
- 41% reported that their doctors are not knowledgable or barely knowledgable about their disorder.
- 58% said they are receiving treatments that are moderately or highly effective.
- 37% are not sure if there are FDA-approved treatments for their rare conditions
- 45% are not sure if there are off-label treatments for their rare conditions
- 22% first met another person with their condition through the Inspire community.
- 58% said being a member of the Inspire community has improved their health.
- 41% were not previously familiar with Rare Disease Day.
To read the complete results of the survey, visit this page.
To join the rare disease community if you're not already a member, click here.
Edited February 26, 2010 at 2:21 pm