VASCULITIS PATIENT-POWERED RESEARCH NETWORK (VPPRN)
RARE DISEASE DAY 2022 COMMUNITY POLL
On Rare Disease Day, a day dedicated to bringing awareness to diseases that directly impact our Network community, the Vasculitis Patient-Powered Research Network asked you to tell us if you had any immediate family members with vasculitis or another form of rare disease.
We asked, you responded, and here’s what you shared with us! Take a look at the interesting results!
NUMBER OF RESPONSES
1,024 Total Responses
Are you one of the more than 1,000 VPPRN members who participated in this community poll?
If so, thank you for sharing your data with us.
Global Response to the Survey!
Of the 1,024 who responded:
74% reside in the United States and
26% reside outside of the US
TYPE OF VASCULITIS
Do you have an immediate family member with vasculitis or another form of rare disease?
For those who responded “Yes,” please identify your relationship with your immediate family member(s). Select all that apply.
With 15% of those surveyed having at least one immediate family member with vasculitis or another form of rare disease, this tells us that…
Rare diseases are not that rare! They are all around us!
These results tell us something important.
#1 – We need to continue to study potential links between vasculitis and other rare diseases.
#2 – Further investigation is needed to understand the role genetics may play on the onset of these rare diseases.
#3 – There is great value in your continued participation in VPPRN community polls, studies, and 6-month surveys. The more we learn from you and the more data we gather, the more we can improve our understanding of vasculitis.
THANK YOU to all who participated in this poll!
We appreciate your enthusiasm and continued engagement with the VPPRN.