World Rare Disease Day 2020
Let's Spread Awareness About Vasculitis!
All forms of vasculitis are considered rare. Let’s join together this year and raise awareness about vasculitis and the broader rare disease community!
Rare Disease Day February 29, 2020
Held the last day of February each year, World Rare Disease Day is an annual observance to raise awareness for 300 million people affected by rare disease globally.
This February 29, what can you do to help elevate the cause and shine a light on rare disease patients and caregivers around the world?
We have some ideas! Read below the many ways you can show your support.
Ways to Get Involved
You can attend an in-person event, follow our activities on social media, or attend an online event like our free educational webinar. See some of the suggested activities below.
National Events You Can Attend:
World Rar
e Disease Day at the National Institutes of Health (NIH)
Registration is now open for Rare Disease Day at the National Institutes of Health (NIH). The aim of Rare Disease Day is to raise awareness about rare diseases, the people they affect, and NIH research collaborations underway to address scientific challenges and to advance new treatments.
Rare Disease Day National Organization for Rare Disorders
Saturday, February 29, 2020
Sponsored by the National Organization for Rare Disorders (NORD).
Vasculitis Specific Rare Disease Day Events:
VF Webinar: Vasculitis 101 – What You Need to Know!
Thursday February 27, 2020
In this live, one-hour webinar, Dr. Warrington will present an overview about what you need to know about the symptoms, diagnosis, treatment, and management of vasculitis.
Sharing is Caring!
We are happy to share information about your upcoming events on our social media and website. We ask that you share our announcements as well. Together we can raise awareness about all forms of vasculitis!
Please share your events or information you’d like us to help promote for Rare Disease Day by emailing Kalen Young at [email protected].
Use the hashtags #vasculitis2020 and #VasculitisPatientPartners with your social media posts.
Participate in Innovative Research
Advancing vasculitis research is essential to improving care for patients with vasculitis. One of the challenges to conducting important research is participation by patients.
Vasculitis Patient Registry!
The Vasculitis Patient-Powered Research Network (VPPRN) is an online, highly functional and successful registry that conducts patient-centered clinical research. The VPPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems. The VPPRN has developed research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis.
Vasculitis Pregnancy Registry
The Vasculitis Pregnancy Registry (V-PREG) is an online, patient-driven pregnancy registry designed to collect data to increase our understanding of pregnancies in women with vasculitis.
V-PREG is open to any pregnant women, over the age of 18 with any form of vasculitis.
