VPPRN Rare Disease Day 2022 Community Poll

VPPRN Rare Disease Day Community Poll

Below are the results from our February 2022 survey

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!

Participant Breakdown

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.

Gender Breakdown

Female 73%        Male 27%

Geographic Breakdown

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

Here's What You Told Us

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!

Thank you to all 1,024 VPPRN members who participated in this poll!  We appreciate your enthusiasm and continued engagement with the VPPRN!

YOUR Data = NEW Research + NEW Treatments

The more people participate, the more data is available to help clinicians and researchers better understand vasculitis.


Christine Yeung, our Network Manager is here to help. Email, call or text at any time and we can provide the assistance you need.

Email: [email protected] or [email protected]
Mobile: (215) 200-6147
Business hours: Monday-Friday between 8AM-5PM ET