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/

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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.

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Latest 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.

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Diagnosis of Relapsing Polychondritis (RP) is often delayed, especially when there is an absence of ear/nose involvement and the presence of fibromyalgia. Dr. Emily Somers of the University of Michigan explains that 64% of patients reported symptoms more than five years prior to being diagnosed with RP. Learn more by watching this video from the Symposium Exploring Autoimmune Diseases hosted by Northern Michigan University’s School of Nursing and the RP Foundation.

Thank you, Dr. Somers.

#RaceforRP #RelapsingPolychondritis #AutoimmuneDisease

Northern Michigan University | NMU School of Nursing | Allegheny Health Network | American Autoimmune Related Diseases Association (AARDA) | Race for RP - "Relapsing Polychondritis"
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15 hours ago

Clinical features of Relapsing Polychondritis (RP) as presented by Dr. Emily Somers of University of Michigan.
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RP is a systemic autoimmune condition that affects cartilage (ears, nose, larynx, large airways, joints, and axial skeleton) and tissues that are rich in proteoglycans (eyes, inner ear, and vasculature) and can progress rapidly. Airway involvement is very prominent.
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Historically, the swollen ear has been the hallmark feature of RP. There is a common perception that RP diagnosis relies primarily on an inflamed ear. While common, the ear inflammation symptom may occur late in the disease, which likely contributes to missing the diagnosis in a lot of cases.

#RaceforRP #RelapsingPolychondritis #AutoimmuneDisease

Northern Michigan University | NMU School of Nursing | Allegheny Health Network | American Autoimmune Related Diseases Association (AARDA) | Race for RP - "Relapsing Polychondritis"
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4 days ago

 

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If you know ;)

I see kidney as uncommon. That has caused me hiccups in keeping my diagnosis. Since I have kidney involvement my dx is always rp and/or wegeners GPA. How uncommon is kidney involvement? I also have heart involvement.

Dr. Emily Somers’ comments on the epidemiology of relapsing polychondritits (RP) from her presentation at the Symposium Exploring Autoimmune Diseases hosted by Northern Michigan University’s School of Nursing and the RP Foundation.
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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.

#RaceforRP #RelapsingPolychondritis #AutoimmuneDisease

Allegheny Health Network | American Autoimmune Related Diseases Association (AARDA) | Northern Michigan University | NMU School of Nursing Race for RP - "Relapsing Polychondritis"
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5 days ago

 

Comment on Facebook

Would love to hear the entire speech. Please post!

It's great to see our friends at The Canadian Society for Relapsing Polychondritis representing RP patients and advocates on Canada Day!

Thank you, #CANforRP!

#RelapsingPolychondritis #RaceforRPHAPPY CANADA 🇨🇦 DAY to all RP patients and Advocates!!
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6 days ago

Its great to see our friends at The Canadian Society for Relapsing Polychondritis representing RP patients and advocates on Canada Day!   

Thank you, #CANforRP!

#RelapsingPolychondritis #RaceforRP

 

Comment on Facebook

Happy Canada Day!

Patients First!
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The AHN Autoimmunity Institute in Pittsburgh focuses on coordinated care and promoting collaboration among teams of experts in one location. They “treat the disease, but care for the patient” with a multi-specialty team-based approach.
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Please watch Dr. Joseph Ahearn of AHN discussing the Autoimmunity Institute during the Symposium Exploring Autoimmune Diseases hosted by Northern Michigan University’s School of Nursing and the RP Foundation.
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#RaceforRP #RelapsingPolychondritis

Allegheny Health Network | American Autoimmune Related Diseases Association (AARDA) | Northern Michigan University | NMU School of Nursing | Race for RP - "Relapsing Polychondritis"

#autoimmunedisease #autoimmune #autoimmunewarrior
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6 days ago

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Diagnosis of #RelapsingPolychondritis (RP) is often delayed, especially when there is an absence of ear/nose involvement. @DrEmilySomers explains that 64% of patients reported symptoms more than 5 years prior to being diagnosed with RP.

@AHNtoday @AARDATweets @NorthernMichU

Clinical features of Relapsing Polychondritis (RP) as presented by @DrEmilySomers.

RP is a systemic autoimmune condition that affects cartilage and tissues that are rich in proteoglycans and can progress rapidly. Airway involvement is very prominent.

@AHNtoday @AARDATweets

The epidemiology of relapsing polychondritis (RP) from @DrEmilySomers' presentation at the Symposium Exploring #AutoimmuneDiseases hosted by @NorthernMichU’s School of Nursing and the RP Foundation.

#RelapsingPolychondritis #RaceforRP #Autoimmune @AARDATweets @AHNtoday

Patients First!

The @AHNtoday Autoimmunity Institute in Pittsburgh focuses on coordinated care and promoting collaboration among teams of experts in one location. They “treat the disease, but care for the patient” with a multi-specialty team-based approach.

#AutoimmuneDisease

Race car drivers, advocates and team members discuss driving RP awareness, accelerating research initiatives, and ongoing collaborative efforts to improve the quality of life for patients with #RelapsingPolychondritis.

#RaceforRP @IMSA @RP_Organization

The Role of the Relapsing Polychondritis Foundation and Race for RP

❲ ▹ ❳ Race For RP

www.vidrise.com

Diseases like relapsing polychondritis (RP) with subtle findings are more challenging to diagnose than other autoimmune diseases, given there is no blood test available to make this diagnosis.

#AutoimmuneDisease #RaceforRP #RelapsingPolychondritis

@AARDATweets @AHNtoday

Genetics, environmental factors, gender, and lifestyle factors can all impact the underlying causes of #AutoimmuneDiseases.

Learn more in this video from Dr. Susan Manzi’s presentation at the Symposium Exploring Autoimmune Diseases. @AARDATweets @AHNtoday @NorthernMichU

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