What Is Relapsing Polychondritis?
Relapsing polychondritis (RP) is a systemic inflammatory disease of unknown etiology that can be fatal. The disease affects multiple organs, particularly cartilaginous structures such as the ears, nose, airways and joints as well as eyes, skin, heart valves and brain.
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RP PATIENT SURVEY: AUTOIMMUNE AND COVID-19
When it comes to how the rapidly spreading coronavirus (COVID-19) is affecting people with vasculitis, medical experts agree there are more questions than answers – at least right now.
To address that concern, the Relapsing Polychondritis Foundation, the Vasculitis Foundation (VF), and the Vasculitis Patient Powered Research Network (VPPRN) have teamed up with partners in the Autoimmune Research Collaborative (ARC) to launch a new COVID-19 patient study.
We want to know your concerns. Please participate in the patient research survey: Autoimmune and COVID-19. Your participation will help researchers, clinicians and other patients better understand how people with relapsing polychondritis and other forms of vasculitis are dealing with COVID-19 / the novel coronavirus.
To get started, please go to: www.vasculitisfoundation.org/rp_vasccovid-19/
Patient Information
Whether you are a newly diagnosed patient, spouse or significant other, parent or other family member of a patient, we are here to help.
We are a patient-founded and patient-driven 501(c)3 non-profit foundation which strives to raise awareness about RP and educate the public, as well as represent patients to the global medical community and support medical research toward a cure.
Learn MoreLatest Foundation News
We strive to provide news related to our progress and efforts as a foundation, important updates and accomplishments of our affiliated and partnership organizations as well as pertinent news we believe impacts patients within the autoimmune disease community and beyond. The sharing or posting of any news does not imply an endorsement of related statistics or confirmation of medical research or information.
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Race For RP
Driving Awareness
The Race for RP supports research, awareness programs, and care for those who are affected by relapsing polychondritis (“RP”) and related diseases. Our drivers our passionate about raising awareness for the autoimmune disease community and RP. While our drivers race for RP, our organization is speeding to find a cure. We’re working to facilitate research and studies to help diagnose, prevent and cure Relapsing Polychondritis, and its related diseases. Whether you’re a professional driver, amateur racer, or a weekend warrior passionate about racing, we encourage you to connect with us to discover how you can Race for RP.
Learn MoreWhile some autoimmune diseases may be less prevalent now, others have increased over time. Dr. Emily Somers discusses several different autoimmune diseases and the combination of genetics and environmental factors contributing to higher rates of certain diseases.
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Learn more from Dr. Somers’ presentation at the Symposium Exploring Autoimmune Diseases hosted by Northern Michigan University’s School of Nursing and the RP Foundation.
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#AutoimmuneDisease #RaceforRP #RelapsingPolychondritis #NMUNursing
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Northern Michigan University | NMU School of Nursing | Allegheny Health Network | American Autoimmune Related Diseases Association (AARDA) | Race for RP - "Relapsing Polychondritis"
2 days ago
The purpose of the Relapsing Polychondritis Foundation is to facilitate awareness, education, and research to improve the quality of life for patients with relapsing polychondritis (RP) and advance a cure for this disease.
In March 2020, the RP Foundation provided a substantial gift to establish the Penn Relapsing Polychondritis Fund, which will support a unique partnership between the University of Pennsylvania and the National Institutes of Health (NIH) sponsored Vasculitis Clinical Research Consortium (VCRC).
Over the past two years, the RP Foundation has made gifts to support initiatives at:
· National Institutes of Health (NIH);
· Friends of Patients at the NIH;
· Allegheny Health Network Autoimmunity Institute;
· Foundation for the Autoimmunity Institute;
· Benaroya Research Institute at Virginia Mason (BRI);
· NMU School of Nursing;
· University of Michigan Division of Rheumatology;
· Lupus Foundation of America; and
· American Autoimmune Related Diseases Association (AARDA).
2 days ago
Some of the clinical initiatives we’ve facilitated include (1) development and implementation of a patient-reported symptoms survey, (2) funding of a patient travel program to the NIH, and (3) hosted an autoimmune disease symposium at NMU to educate current and future healthcare professionals – with eligible attendees awarded CMEs and CEUs. We’re also collaborating with experts to advance RP research. Most recently, we facilitated the launch of the UPenn RP Program, which will develop a world class referral center for patients, integrate academic medical centers and patient support organizations, and dedicate clinical resources to improve patient care. For additional information, please go to: https://polychondritis.org/foundation-news/ Thank you for your inquiry and support of the RP clinical efforts and research initiatives benefiting patients and their families.
Thankful that my husband was able to benefit for a time, from the expertise at UPenn - he would be happy to hear of the newest advances in local RP care and research
Thank you for your continued support and efforts in behalf of RP patients. Specificity, what clinical efforts or research initiatives did these funds support?
Congratulations, Relapsing Polychondritis Foundation! Thank you for your support!
Noel R. Rose, MD, PhD
1927 – 2020
It is with great sadness that we learned of Dr. Noel Rose’s sudden and unexpected passing. The autoimmunity community and the world have lost an exceptional man, a pioneer considered the “father of autoimmune disease,” whose award-winning and Nobel-nominated body of research not only laid the foundation for understanding autoimmune disease in humans but also inspired generations of researchers to pursue immunology research.
Relapsing Polychondritis Foundation board members were honored to meet and sit with Dr. Rose at the American Autoimmune Related Diseases Association (AARDA) 25th Anniversary Dinner where he was the keynote speaker, and we learned that in addition to his incredible intellect, he was a man of exceeding kindness, graciousness, and humility – one who was known to understate his greatness by saying he was “really the son of autoimmune disease.”
We extend our deepest condolences to Dr. Rose’s family, friends, and colleagues and hope that through our work, we will be able to build on and continue his legacy of revolutionary autoimmunity research. He will be deeply missed and remembered warmly and reverentially.
hub.jhu.edu/gazette/2014/july-august/what-ive-learned-noel-rose/
5 days ago
Race for RP - "Relapsing Polychondritis"
Race for RP - "Relapsing Polychondritis"
Round 3 of the IMSA Michelin Pilot Challenge at Road America was one to remember! Read more below about the Race for RP drivers and teams, watch their track-side and paddock update videos, and check out the extensive gallery of images from the exciting weekend of racing. #RaceforRP #RelapsingPolychondritis #IMSA #IMPC KohR Motorsports Carbahn Autoworks Road Shagger Racing Michelin Aston Martin Racing https://bit.ly/RaceforRP_RoadAmerica20206 days ago
Race for RP - "Relapsing Polychondritis"Congratulations, Flewitt Racing, Euan Hankey and Balfe Motorsport in the No. 21 McLaren 570s GT4, for a successful double-podium weekend at Oulton Park, with a P1 WIN in GT4 Pro-am in Race 1 and a P1 WIN in GT4 overall in Race 2, during Round 1 and the return of the British GT Championship! ⠀⠀⠀⠀⠀⠀⠀⠀ Thank you for carrying the Race for RP brand and driving global awareness of relapsing polychondritis (RP). ⠀⠀⠀⠀⠀⠀⠀⠀ Sky Sports My Doculife Rebellion Timepieces Topaz Detailing VirtusLab #inception ⠀⠀⠀⠀⠀⠀⠀⠀ #BritishGT #RaceforRP #McLaren #McLaren570S #McLarenP1 #OultonPark
1 week ago
While some autoimmune diseases may be less prevalent now, others have increased over time. Learn more from @DrEmilySomers' presentation at the Symposium Exploring #AutoimmuneDiseases hosted by @NorthernMichU's School of Nursing and the RP Foundation.
@AHNtoday @AARDATweets
Round 3 of the @IMSA @MichelinRaceUSA Pilot Challenge at @RoadAmerica was one to remember! Read about the Race for RP drivers and teams and check out the gallery of images from the weekend of racing.
#RaceforRP #RelapsingPolychondritis #IMSA #IMPC
https://t.co/UkTy9L5DzS
Dr. Peter Grayson: “This is going to be an extremely exciting year for relapsing polychondritis (RP) research!”
Thank you, Drs. Grayson and Ferrada and the other members of the International RP Research Network.
@petercgrayson @maferradastrong
Thank you, Neil Langberg – the “Old Guy Racing” (OGR) – for racing full throttle to help build resources to accelerate #RelapsingPolychondritis (RP) research. The new @Penn program is a big deal and the patient/research outcomes are critically important!
#RaceforRP @FerrariRaces
Tune in Saturday and Sunday at https://t.co/t2B0E1Pnqc to watch Race for RP driver, Neilio, in Round 3 of the #FerrariChallenge North American Championship at @IMS.
Thank you, Neilio, for driving awareness and accelerating research of #RelapsingPolychondritis (RP).
#RaceforRP
Here we go…
The Ferrari Challenge North American Championship returns for Round 3 at @IMS.
Neilio will be piloting the @Scuderia_Corsa No. 153 #RaceforRP Ferrari 488 Challenge Evo, driving awareness about Relapsing Polychondritis (RP).
#FerrariChallenge @FerrariRaces
While there have been breakthroughs in the treatment of certain autoimmune diseases, more work needs to be done. Now, researchers and drug companies are focused on targeted therapies.
@AHNtoday @NorthernMichU @AARDATweets
#RaceforRP #RelapsingPolychondritis #AutoimmuneDisease
