VASCULITIS PATIENT-POWERED RESEARCH NETWORK (VPPRN)

6-MONTH CHECK-IN FORMS

VPPRN Community Dashboard | January & July 2023

Take a look below at what we learned from the VPPRN community about

FLARES, FATIGUE, PAIN, SYMPTOMS OF VASCULITIS and CURRENT STATE OF VASCULITIS

from the January and/or July 2023 check-ins.

What did we learn about FLARES and VASCULITIS?

Overall, we see similar rates of reported flares at both the January and July 2023 check-ins.

    • About two-thirds of patients in the VPPRN community did not report a vasculitis flare in the past 6 months.
    • We see approximately 26% of patients who did report a flare.

To better understand why some patients with vasculitis experience flares and some do not, we need the VPPRN community to continue to provide patient data to do the research needed to find answers.  Patients power research in vasculitis!  Please continue to share your health updates with us and continue to stay engaged in research.

What did we learn about FATIGUE and VASCULITIS?

Overall, we see similar numbers for fatigue ratings at both the January and July 2023 check-ins.

    • We learned that most patients (over 88%) experience some fatigue related to their vasculitis. 

Fatigue is not uncommon among patients with vasculitis.  Patients may have fatigue even if other vasculitis symptoms are under control.  By completing the VPPRN check-in forms every 6 months, it will tell us more about fatigue and its impact on quality of life for people living with vasculitis.  This research is vital and may lead us to identify ways to improve overall quality of life.

What did we learn about SYMPTOMS OF VASCULITIS?

The scores for symptoms of vasculitis are comparable at both the January and July 2023 check-ins.

    • Most patients reported as either having no symptoms of vasculitis (22% and 23% with score = 0) or experiencing moderate symptoms (21% with score = 5) over the past 28 days.
    • While the majority of the VPPRN community scored on the lower half of the scale (77% and 79% with scores 0-5 on a scale of 0-10), there were approximately 6%-8% in January and July who scored on the higher end, with scores ranging from 8-10.

What explains the range of responses?  More research is needed to better understand why some people do better than others.  That’s why it is important for you to check-in with the VPPRN every 6 months – even if there are no updates to report, or if your vasculitis is not currently active – this information is important as we collect information over time.  The more data we have, the more answers we can find!

What did we learn about PAIN and VASCULITIS?

The ratings for pain are quite similar when comparing January and July 2023 scores.

    • Approximately 50% of patients in January and July experienced little to no pain on average, with scores ranging from 0-2 on a scale of 0-10.
    • Alternatively, almost 30% of patients with vasculitis experienced moderate to severe pain with scores 5 and above in both January and July.

Why do some people experience more pain than others?  That is a good question and one that the VPPRN wants to understand more as we collect data over time with our 6-month check-in forms.  

What did we learn about MEMBERS’ CURRENT STATE OF VASCULITIS?

At the July 2023 check-in, we asked our Network members to tell us their current state of vasculitis.

    • About two-thirds of patients in the VPPRN community reported that they are currently in remission.  This is encouraging to see.
    • We do, however, see approximately 24% of patients who reported that their vasculitis is currently active.

To better understand why some patients with vasculitis are in remission and some are not, we need the VPPRN community to continue to provide their data to the VPPRN.  The data provided is mobilizing our team of doctors and researchers with the information they need to work towards improving the quality of life for all patients across all types of vasculitis and ages.  

HOW DO YOU COMPARE TO OTHERS IN THE VPPRN COMMUNITY?

Click below and see how patients with each type of vasculitis compare with the VPPRN community as a whole.

Compared to patients with other forms of vasculitis, patients with Behçet’s Disease (BD) reported more flares and higher scores for fatigue, symptoms of vasculitis, and pain at the July 2023 check-in.  Additionally, a larger percentage of patients with BD reported their vasculitis as active.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with Behçet’s disease (BD)

FLARES and VASCULITIS

    • Flare Reporting: Patients with BD reported more flares in the past 6 months (70%) compared to 26% in the VPPRN community.  

Patients with Behçet’s disease

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 55% of patients with BD reported “quite a bit” or “very much” fatigue in the past 6 months. This is higher than the 34% in the VPPRN community.

Patients with Behçet’s disease

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: Patients with BD scored their symptoms of vasculitis higher over the past 28 days.  9% of patients with BD reported no symptoms of vasculitis compared to 22% in the VPPRN community.

Patients with Behçet’s disease

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: Patients with BD reported more pain in the past 6 months. 11% of patients with BD reported no pain.  This is less than the 27% in the VPPRN community.

Patients with Behçet’s disease

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 62% of patients with BD reported their vasculitis as active.  This is higher than the 24% reported in the Network.

Patients with Behçet’s disease

Entire VPPRN Community

At the July 2023 check-in, patients with central nervous system vasculitis (CNSV) reported more flares and higher scores for fatigue, symptoms of vasculitis, and pain when compared to patients with other forms of vasculitis.  Additionally, a larger percentage of patients with CNSV reported their vasculitis as currently active.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with CNSV

FLARES and VASCULITIS

    • Flare Reporting: Patients with CNSV reported more flares in the past 6 months (32%) compared to 26% in the VPPRN community.

Patients with CNSV

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 40% of patients with CNSV reported “quite a bit” or “very much” fatigue in the past 6 months. This is higher than the 34% reported from the VPPRN community.

Patients with CNSV

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: Patients with CNSV scored their symptoms of vasculitis higher over the past 28 days.  11% of patients with CNSV reported no symptoms of vasculitis compared to 22% in the VPPRN community.

Patients with CNSV

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: Patients with CNSV reported more pain in the past 6 months.  14% patients with CNSV experienced no pain, compared to 27% in the VPPRN community.

Patients with CNSV

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 32% of patients with CNSV reported their vasculitis as active.  This is higher than the 24% reported in the Network.

Patients with CNSV

Entire VPPRN Community

Compared to patients with other forms of vasculitis at the July 2023 check-in, patients with cryoglobulinemic vasculitis (cryoglobulinemia) reported more flares, higher scores for fatigue, symptoms of vasculitis, and pain, and a higher percentage of patients reported active vasculitis.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with cryoglobulinemic vasculitis (cryoglobulinemia)

FLARES and VASCULITIS

    • Flare Reporting: Patients with cryoglobulinemic vasculitis reported more flares in the past 6 months (35%) compared to 26% in the VPPRN community.

Patients with cryoglobulinemic vasculitis

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 39% of patients with cryoglobulinemic vasculitis reported “quite a bit” of fatigue in the past 6 months, compared to 23% in the VPPRN community.

Patients with cryoglobulinemic vasculitis

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: Patients with cryoglobulinemic vasculitis scored their symptoms of vasculitis higher over the past 28 days.  11% of patients with cryoglobulinemic vasculitis reported no symptoms of vasculitis compared to 22% in the VPPRN community.

Patients with cryoglobulinemic vasculitis

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: Patients with cryoglobulinemic vasculitis reported more pain in the past 6 months.  15% of patients with cryoglobulinemic vasculitis reported no pain.  This is less than the 27% in the VPPRN community.

Patients with cryoglobulinemic vasculitis

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 35% of patients with cryoglobulinemic vasculitis reported their vasculitis as active.  This is higher than the 24% reported in the Network.

Patients with cryoglobulinemic vasculitis

Entire VPPRN Community

Compared to patients with other forms of vasculitis, patients with eosinophilic granulomatosis with polyangiitis (EGPA) reported similar scores/ratings for flares, fatigue, pain, and current state of vasculitis at the July 2023 check-in.  Patients with EGPA, however, scored their symptoms of vasculitis higher than others in the VPPRN community.  

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with eosinophilic granulomatosis with polyangiitis (EGPA)

FLARES and VASCULITIS

    • Flare Reporting: 27% of patients with EGPA reported a flare in the past 6 months. This is similar to the 26% in the VPPRN community who reported a flare within the same timeframe.

Patients with EGPA

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 12% of patients with EGPA reported no fatigue in the past 6 months. This is similar to the 11% reported in the VPPRN community.

Patients with EGPA

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: Patients with EGPA scored their symptoms of vasculitis higher over the past 28 days.  12% of patients with EGPA reported no symptoms of vasculitis compared to 22% in the VPPRN community.

Patients with EGPA

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: 81% of patients with EGPA reported no to moderate pain (scores 0-5) in the past 6 months.  This is the same percentage reported in the VPPRN community.

Patients with EGPA

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 24% of patients with EGPA reported their vasculitis as active.  This is the same percentage reported in the VPPRN community.

Patients with EGPA

Entire VPPRN Community

Compared to patients with other forms of vasculitis, patients with giant cell (temporal) arteritis (GCA) reported similar scores/ratings for flares, fatigue, pain, and members’ current state of vasculitis at the July 2023 check-in.  We do see a difference in the scores for symptoms of vasculitis, with a higher percentage of patients with GCA reporting no symptoms at all.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with giant cell (temporal) arteritis (GCA)

FLARES and VASCULITIS

    • Flare Reporting: 25% of patients with GCA reported a flare in the past 6 months. This is similar to the 26% in the VPPRN community who reported a flare.

Patients with GCA

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 11% of patients with GCA reported no fatigue in the past 6 months. This is the same percentage reported in the VPPRN community.

Patients with GCA

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: Patients with GCA scored their symptoms of vasculitis lower over the past 28 days. 34% of patients with GCA reported no symptoms of vasculitis, compared to the 22% in the VPPRN community. 

Patients with GCA

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: 27% of patients with GCA reported no pain in the past 6 months. This is the same percentage reported in the VPPRN community.

Patients with GCA

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 24% of patients with GCA reported their vasculitis as active.  This is the same percentage reported in the VPPRN community.

Patients with GCA

Entire VPPRN Community

Compared to patients with other forms of vasculitis at the July 2023 check-in, patients with granulomatosis with polyangiitis (GPA) reported similar scores/ratings for fatigue, symptoms of vasculitis, and pain.  However, there were differences in the reporting of flares and current status of vasculitis, with patients with GPA reporting fewer flares and a smaller percentage reporting active vasculitis. 

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with granulomatosis with polyangiitis (GPA)

FLARES and VASCULITIS

    • Flare Reporting: Patients with GPA reported fewer flares in the past 6 months (17%) compared to 26% in the VPPRN community.

Patients with GPA

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 13% of patients with GPA reported no fatigue in the past 6 months.  This is similar to the 11% reported in the VPPRN community.

Patients with GPA

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: 25% of patients with GPA reported no symptoms of vasculitis.  This is similar to the 22% in the VPPRN community.

Patients with GPA

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: 84% of patients with GPA reported no to moderate pain (scores 0-5) in the past 6 months.  This is similar to the 81% in the VPPRN community who reported these same scores.

Patients with GPA

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 18% of patients with GPA reported their vasculitis as active.  This is less than the 24% reported in the Network.

Patients with GPA

Entire VPPRN Community

Compared to patients with other forms of vasculitis, patients with IgA vasculitis (Henoch-Schönlein) reported similar scores for fatigue, pain, and reporting of active vasculitis at the July 2023 check-in.  We do see differences in the flares reported and scores/ratings for symptoms of vasculitis.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with IgA vasculitis (Henoch-Schönlein)

FLARES and VASCULITIS

    • Flare Reporting: Patients with IgA vasculitis reported more flares in the past 6 months (33%) compared to 26% in the VPPRN community.

Patients with IgA vasculitis

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 15% of patients with IgA vasculitis reported no fatigue in the past 6 months.  This is similar to the 11% reported in the VPPRN community.

Patients with IgA vasculitis

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: Patients with IgA vasculitis scored their symptoms of vasculitis lower over the past 28 days.  39% of patients with IgA vasculitis reported no symptoms at all compared to 22% in the VPPRN community.

Patients with IgA vasculitis

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: 29% of patients with IgA vasculitis reported moderate to severe pain (scores 5-10).  This is similar to the 31% in the VPPRN community.

Patients with IgA vasculitis

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 24% of patients with IgA vasculitis reported their vasculitis as active.  This is the same percentage reported in the VPPRN community.

Patients with IgA vasculitis

Entire VPPRN Community

Compared to patients with other forms of vasculitis, patients with microscopic polyangiitis (MPA) reported similar scores for fatigue and symptoms of vasculitis at the July 2023 check-in.  There were differences in the reporting of flares, pain, and active vasculitis.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with microscopic polyangiitis (MPA)

FLARES and VASCULITIS

    • Flare Reporting: Patients with MPA reported fewer flares in the past 6 months (17%) compared to 26% in the VPPRN community.

Patients with MPA

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 12% of patients with MPA reported no fatigue in the past 6 months. This is similar to the 11% in the VPPRN community.

Patients with MPA

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: 25% of patients with MPA reported no symptoms of vasculitis.  This is similar to the 22% in the VPPRN community.

Patients with MPA

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: Patients with MPA reported less pain in the past 6 months.  33% of patients with MPA reported no pain in the past 6 months, compared to 27% in the VPPRN community.

Patients with MPA

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 19% of patients with MPA reported their vasculitis as active. This is less than the 24% reported in the Network.

Patients with MPA

Entire VPPRN Community

Compared to patients with other forms of vasculitis, patients with polyarteritis nodosa (PAN) reported similar scores/ratings for flares, fatigue, and reporting of active vasculitis at the July 2023 check-in.  We do, however, see differences in the scores for symptoms of vasculitis and pain.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with polyarteritis nodosa (PAN)

FLARES and VASCULITIS

    • Flare Reporting: 27% of patients with PAN reported a flare in the past 6 months.  This is similar to the 26% in the VPPRN community.

Patients with PAN

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 9% of patients with PAN reported no fatigue in the past 6 months. This is similar to the 11% in the VPPRN community.

Patients with PAN

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: Patients with PAN scored their symptoms of vasculitis higher over the past 28 days.  16% of patients with PAN reported no symptoms at all compared to 22% in the VPPRN community.

Patients with PAN

Entire VPPRN Community

PAIN and VASCULITIS

  • Pain: Patients with PAN reported more pain in the past 6 months. 21% patients with PAN experienced no pain, compared to 27% in the VPPRN community.

Patients with PAN

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 23% of patients with PAN reported their vasculitis as active. This is similar to the 24% in the VPPRN community.

Patients with PAN

Entire VPPRN Community

At the July 2023 check-in, patients with Takayasu’s arteritis (TAK) reported similar scores for fatigue and pain when compared to patients with other forms of vasculitis.  We do see differences in the flares reported, scores/ratings for symptoms of vasculitis, and reporting of active vasculitis.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with Takayasu’s arteritis (TAK)

FLARES and VASCULITIS

    • Flare Reporting: Patients with TAK reported fewer flares in the past 6 months (16%) compared to 26% in the VPPRN community.

Patients with TAK

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 9% of patients with TAK reported no fatigue in the past 6 months. This is similar to the 11% in the VPPRN community.

Patients with TAK

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

  • Symptoms of Vasculitis: Patients with TAK scored their symptoms of vasculitis higher over the past 28 days. 15% of patients with TAK reported no symptoms of vasculitis over the past 28 days compared to 22% in the VPPRN community.

Patients with TAK

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: 26% of patients with TAK reported no pain in the past 6 months. This is similar to the 27% reported in the VPPRN community.

Patients with TAK

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 20% of patients with TAK reported their vasculitis as active.  This is less than the 24% reported in the Network.

Patients with TAK

Entire VPPRN Community

Compared to patients with other forms of vasculitis, patients with urticarial vasculitis reported similar scores/ratings for fatigue, symptoms of vasculitis, and pain at the July 2023 check-in.  We do see higher numbers among patients with urticarial vasculitis on reporting of flares and active vasculitis.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with urticarial vasculitis

FLARES and VASCULITIS

    • Flare Reporting: Patients with urticarial vasculitis reported more flares in the past 6 months (47%) compared to 26% in the VPPRN community.

Patients with urticarial vasculitis

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: Patients with urticarial vasculitis reported less fatigue in the past 6 months.  16% of patients with urticarial vasculitis reported no fatigue in the past 6 months compared to 11% in the VPPRN community.

Patients with urticarial vasculitis

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: 24% of patients with urticarial vasculitis reported no symptoms of vasculitis over the past 28 days.  This is similar to the 22% in the VPPRN community.

Patients with urticarial vasculitis

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: 28% of patients with urticarial vasculitis reported no pain in the past 6 months.  This is comparable to the 27% in the VPPRN community.

Patients with urticarial vasculitis

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 50% of patients with urticarial vasculitis reported their vasculitis as active.  This is higher than the 24% reported in the Network.

Patients with urticarial vasculitis

Entire VPPRN Community

Compared to patients with other forms of vasculitis, patients with other/suspected diagnosis reported similar scores for fatigue, symptoms of vasculitis, and pain at the July 2023 check-in.  The differences we see are in the reporting of flares and members’ state of vasculitis.

If you have concerns about your health scores, please discuss with your rheumatologist or primary care provider.  

The graphs below reflect the scores/ratings for patients with other/suspected diagnosis

FLARES and VASCULITIS

    • Flare Reporting: Patients with other/suspected diagnosis reported more flares in the past 6 months (44% compared to 26% in the VPPRN community).

Patients with other/suspected diagnosis

Entire VPPRN Community

FATIGUE and VASCULITIS

    • Fatigue: 11% of patients with other/suspected diagnosis reported no fatigue in the past 6 months. This is the same percentage reported in the VPPRN community.

Patients with other/suspected diagnosis

Entire VPPRN Community

SYMPTOMS OF VASCULITIS

    • Symptoms of Vasculitis: 22% of patients with other/suspected diagnosis reported no symptoms of vasculitis over the past 28 days. This is the same percentage reported in the VPPRN community.

Patients with other/suspected diagnosis

Entire VPPRN Community

PAIN and VASCULITIS

    • Pain: 30% of patients with other/suspected diagnosis reported no pain in the past 6 months.  This is comparable to the 27% in the VPPRN community.

Patients with other/suspected diagnosis

Entire VPPRN Community

CURRENT STATE OF VASCULITIS

    • Current State of Vasculitis: 37% of patients with other/suspected diagnosis reported their vasculitis as active.  This is higher than the 24% reported in the Network.

Patients with other/suspected diagnosis

Entire VPPRN Community

WHAT’S NEXT?

The data from these studies are currently under analysis. 

We will share the results as soon as we can!

VascStrength (VascStrong)

Goal: To describe the prevalence of common health conditions associated with frailty in patients living with vasculitis and describe its impact on health-related quality of life and clinical outcomes.

To learn more, click HERE.


Sleep-Vasc: Quality of Sleep in Vasculitis

Goal: To learn more about the quality of sleep of patients living with vasculitis and better understand factors contributing to both good and poor sleep habits.

To learn more, click HERE.


Neurologic Involvement in ANCA-Associated Vasculitis Study

Goal: To assess the impact of neurologic involvement (NI) on health-related quality of life (HRQoL) in patients living with ANCA-associated vasculitis (AAV).


Assessing Need and Preferences for a Mind-Body Intervention in Patients with Vasculitis Survey

Goal: To determine if people living with vasculitis are interested in mind-body interventions to help manage uncertainty, pain, fatigue, and stress.

Learn more about these open VPPRN studies and how you can participate.

Patients’ Perspectives on Disease Activity in Large-Vessel Vasculitis 

Goal: Through this study, we hope to create standard definitions of disease activity and remission for patients with giant cell arteritis and Takayasu’s arteritis for use in clinical studies/trials.

Enrollment is closed for this study.


VCRC-VPPRN EGPA Registry

Goal: To conduct clinical research and clinical trials to learn more about EGPA with the goal of improving management and treatment of this complex disease.

To learn more about this study, click HERE.


Vasculitis Pregnancy Registry (VPREG)

Goal: The primary objective of this study is to understand pregnancy characteristics and outcomes among women with vasculitis.

To learn more about this study, click HERE.

More research is coming!

There is still much to learn about vasculitis, and the VPPRN community can change that.

The VPPRN is a PATIENT-POWERED network which means that PATIENTS POWER VASCULITIS RESEARCH.  

The more patient data our VPPRN community provides, the more answers we can find. 

Why do some patients do better than others?  How can we better understand why these differences exist?  The answer is research.

Please stay involved and engaged in the VPPRN, and please continue to share your health updates every January and July. 

We are stronger together.  Together we make a difference.

THANK YOU

THANK YOU to all 1,326 VPPRN members who shared their health updates with us last January

and all 1,420 VPPRN members who did so in July 2023! 

We appreciate your enthusiasm and continued engagement with the VPPRN!

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