Vasculitis Patient-Powered Research Network

30/05/2018

Do you use an app to help manage your ? If so, what apps do you recommend and what features do you like best about them?

Living in a digital age means that there are numerous mobile apps that can help you manage your chronic illness, from managing diet to improving sleep.

22/05/2018

through the eyes of these brave, hopeful young adults with vasculitis!

22/05/2018

Keep the conversation going by sharing YOUR experience and use ! We hope to shed light on a wide range of experiences including: quality of life changes, hiding pain, the societal expectation to have kids, and fear of disease progression.

Here are just a few of the comments people have shared to help others :

"When I flare, my mind becomes so confused I cannot take care of my children. "

"My HSP vasculitis is so disfiguring causing scars all over my legs...AND that is why I don't wear shorts or skirts, even in hot weather."

"KnowVasculitis. I can barely walk because my legs and feet are so swollen. I haven't found a medication yet that has reduced the swelling."

"Did you know I am so sensitive to cold that I practically wear a snow suit to the beach? "

22/05/2018

What is ONE thing you wish people knew about vasculitis? Join the conversation today and raise awareness about vasculitis! V-PPRN

21/05/2018

The VPPRN and VF were proud to attend and represent vasculitis at the Patient Advocacy Leaders (PALs) United for Lung Health Advocacy Roundtable this weekend. It was a dynamic meeting with health advocacy leaders all collaborating to raise the profile of lung health and advance better patient-driven solutions.

Vasculitis Awareness Month was an opportune time for us to participate in a collaborative meeting with other patient advocacy groups representing many chronic health conditions. The VPPRN and VF raised the voice of patients with vasculitis who have lung involvement (e.g. eosinophilic granulomatosis with polyangiitis (EGPA)) and shared our vision for advancing patient-driven principles in the broader context of raising the profile of lung health.

18/05/2018

We know that patients with have symptoms that other people don't understand or know about. Join us on Tuesday, May 22 for a 24-hour twitter event and share one thing you wish others knew about living with vasculitis by using with V-PPRN & VasculitisFoundation

17/05/2018

Dr. Springer is an inspiration! The VPPRN is honored to have him as a clinical investigator on our team. His story speaks to the passion, drive, and dedication of the investigators and direct care providers engaged in research.

Extraordinary Vasculitis Stories: Dr. Jason Springer Introduction: 0:26 Medical Background: :38 Wanted to establish a vasculitis center where one didn’t exis...

16/05/2018

Congratulations! Your participation in research with the VPPRN results in a new patient-reported outcome (PRO) questionnaire for ANCA-associated vasculitis (AAV) that is a reliable and feasible tool able to distinguish between different disease states.

Objectives To finalise and validate a disease-specific patient-reported outcome (PRO) measure: the ANCA-associated vasculitis patient-reported outcome (AAV-PRO) questionnaire. Using a 35-item candidate questionnaire developed following 50 qualitative interviews in the UK, USA and Canada, a longitudi...

10/05/2018

There is still time to participate in the Journey to Diagnosis study!
We need more patients living with ALL forms of vasculitis to participate! http://ow.ly/cNWp30jWhxM

09/05/2018

Early detection is so important for long term health and success of treatments. Be sure to watch the "Connect the Dots" video and share with family, friends, and health care providers! Vasculitis Awareness Month http://ow.ly/pVlL30jUKJP

08/05/2018

Week 2 of Vasculitis Awareness Month is focused on Dreaming Big about Early Diagnosis.

What did your journey to a diagnosis of vasculitis look like? How long did it take? The V-PPRN research team wants to know about the factors that impacted your journey to a diagnosis of vasculitis.

What did your journey to a diagnosis of vasculitis look like? How long did it take? The V-PPRN research team wants to know about the factors that impacted your journey to a diagnosis of vasculitis.