Chondritis

Genomic Testing Cooperative and Their Cooperative Member Laboratories Expand Hematology Panels to Cover VEXAS Disease and a New Prognostic Biomarker in Myeloproliferative Neoplasms

Retrieved on: 
Wednesday, March 2, 2022

Genomic Testing Cooperative, LCA (GTC) announced today that their hematology molecular profiling is expanded to cover analysis of the UBA1 and NFE2 genes.

Key Points: 
  • Genomic Testing Cooperative, LCA (GTC) announced today that their hematology molecular profiling is expanded to cover analysis of the UBA1 and NFE2 genes.
  • Detecting the presence of mutations in the UAB1 gene is the only way for confirming the diagnosis of this disease.
  • Testing for these two genes will be included when all hematology profiling tests are ordered from GTC laboratories as well as from the Co-Op member laboratories.
  • These genes are now included in the three hematology tests: Hematology Profile (DNA only), Hematology Profile Plus (DNA+RNA) and Liquid Biopsy Hematology Profile.

Renowned Clinician-Scientist Joins Division of Rheumatology at NYU Langone Health

Retrieved on: 
Monday, October 18, 2021

NEW YORK, Oct. 18, 2021 /PRNewswire/ -- Nationally recognized for his work studying a novel inflammatory disorder known as VEXAS, David B. Beck, MD, PhD , has joined the Division of Rheumatology at NYU Langone.

Key Points: 
  • NEW YORK, Oct. 18, 2021 /PRNewswire/ -- Nationally recognized for his work studying a novel inflammatory disorder known as VEXAS, David B. Beck, MD, PhD , has joined the Division of Rheumatology at NYU Langone.
  • Dr. Beck previously worked as a postdoctoral fellow and clinical scholar at the National Institutes of Health (NIH).
  • At NYU Langone, he has dual appointments as an assistant professor in the Department of Medicine and the Department of Biochemistry and Molecular Pharmacology , and is a member of the Center for Human Genetics and Genomics and the Division of Rheumatology.
  • An alumnus of Brown University, Dr. Beck earned his medical degree and PhD in biochemistry from NYU School of Medicine.

Relapsing Polychondritis Foundation to Present Poster Highlighting Establishment of Penn RP Program at the EULAR 2021 Virtual Congress

Retrieved on: 
Wednesday, May 26, 2021

NEW YORK, May 26, 2021 /PRNewswire-PRWeb/ -- The Relapsing Polychondritis Foundation announced that a poster abstract about the founding and launch of the Penn RP Program (Philadelphia, PA) has been accepted for presentation by the European Alliance of Associations for Rheumatology (EULAR) 2021 Virtual Congress to be held on June 2-5, 2021, in Paris, France.

Key Points: 
  • NEW YORK, May 26, 2021 /PRNewswire-PRWeb/ -- The Relapsing Polychondritis Foundation announced that a poster abstract about the founding and launch of the Penn RP Program (Philadelphia, PA) has been accepted for presentation by the European Alliance of Associations for Rheumatology (EULAR) 2021 Virtual Congress to be held on June 2-5, 2021, in Paris, France.
  • "We are excited and honored to participate in the EULAR 2021 Virtual Congress and share how a patient's work in advocacy helped build a powerhouse research program.
  • Details of the abstract and poster presentation are as follows:
    Date: Available for browsing on June 3, 2021 through July 5, 2021.
  • For more information about relapsing polychondritis, the RP Foundation, and the Race for RP, please visit https://www.polychondritis.org and https://raceforrp.org/ .

Relapsing Polychondritis Advocate Isabel Bautista Joins American College of Rheumatology Patient Perspectives Program Review Committee

Retrieved on: 
Tuesday, May 11, 2021

b'NEW YORK, May 11, 2021 /PRNewswire-PRWeb/ -- The Relapsing Polychondritis Foundation (RP Foundation) announced that RP advocate Isabel Bautista has been selected to join the American College of Rheumatology (ACR) Patient Perspectives Program Review Committee.\nThe Patient Perspectives Program invites patients impacted by rheumatic diseases such as RP, along with patient sponsor organizations such as a nonprofit patient group, to submit stories that share their journeys and experiences with thousands of rheumatology healthcare providers worldwide.

Key Points: 
  • b'NEW YORK, May 11, 2021 /PRNewswire-PRWeb/ -- The Relapsing Polychondritis Foundation (RP Foundation) announced that RP advocate Isabel Bautista has been selected to join the American College of Rheumatology (ACR) Patient Perspectives Program Review Committee.\nThe Patient Perspectives Program invites patients impacted by rheumatic diseases such as RP, along with patient sponsor organizations such as a nonprofit patient group, to submit stories that share their journeys and experiences with thousands of rheumatology healthcare providers worldwide.
  • Selected submissions are presented at the ACR annual meeting and published online and in Arthritis & Rheumatology, an official journal of the ACR.\nMs.
  • Bautista previously presented a Patient Perspective poster titled Patients With Relapsing Polychondritis ("RP") and an Advocate Manufactured Custom Cloth Masks to Combat COVID-19: This Mask Project Provided a Sense of Purpose, Created Unity, Increased Awareness of RP, Facilitated Research, and Generated Hope at ACR Convergence 2020.
  • "\nFor more information about relapsing polychondritis, the RP Foundation, and the Race for RP, please visit https://www.polychondritis.org and https://raceforrp.org.

Relapsing Polychondritis Patients and Advocates Emphasize the Benefits of Collaboration in Prestigious Patient Perspective Poster Program

Retrieved on: 
Tuesday, December 8, 2020

This year's annual meeting also featured five relapsing polychondritis patient poster submissions that were selected for presentation.

Key Points: 
  • This year's annual meeting also featured five relapsing polychondritis patient poster submissions that were selected for presentation.
  • Four of the posters were sponsored by the Relapsing Polychondritis Foundation and one poster was sponsored by the Canadian Society for Relapsing Polychondritis .
  • "Poster presentations like these are an important part of our efforts," said David Bammert, President of the RP Foundation.
  • "They provide the opportunity for the medical community to better understand the patient's perspective regarding living with RP and facilitate pathways for more efficient patient care."

Relapsing Polychondritis Foundation Announces a Powerhouse Healthcare Coalition

Retrieved on: 
Tuesday, May 26, 2020

With support from Race for RP, Nancy Linn and Neil Langberg, the Penn Relapsing Polychondritis Fund will expand these exceptional programs that will improve care for patients with RP.

Key Points: 
  • With support from Race for RP, Nancy Linn and Neil Langberg, the Penn Relapsing Polychondritis Fund will expand these exceptional programs that will improve care for patients with RP.
  • "As a patient, I am extremely pleased the Foundation has implemented its plan to support research to advance a cure for relapsing polychondritis," said Nancy Linn, Chair of the Relapsing Polychondritis Foundation.
  • "The Penn RP Program represents the RP Foundation's unwavering commitment to powerful research initiatives that improve patient care and relentlessly advance the path to a cure," said David Bammert, President of the Relapsing Polychondritis Foundation.
  • Relapsing polychondritis (RP) is a debilitating and sometimes fatal systemic inflammatory disease characterized by recurrent inflammation of cartilage and other tissues throughout the body.

Race for Relapsing Polychondritis' Drive for Awareness Makes a Stop in Marquette this Week for A Symposium Exploring Autoimmune Diseases

Retrieved on: 
Wednesday, September 18, 2019

Whether it's lupus, rheumatoid arthritis, relapsing polychondritis or one of the many other autoimmune diseases, not nearly enough is known about diagnosis and treatment.

Key Points: 
  • Whether it's lupus, rheumatoid arthritis, relapsing polychondritis or one of the many other autoimmune diseases, not nearly enough is known about diagnosis and treatment.
  • NMU's Doctor of Nursing Practice Program, in conjunction with the Race for RP (Relapsing Polychondritis) present A Symposium Exploring Autoimmune Diseases, Friday, September 20, at Reynolds Recital Hall.
  • A Symposium Exploring Autoimmune Diseases takes place Friday, September 20, 12:30 p.m. 4:00 p.m. at Reynolds Recital Hall at NMU.
  • For additional information visit, http://www.bit.ly/AutoimmunitySymposium
    Race for RP supports research, awareness programs, and quality care for those who are affected by relapsing polychondritis and related diseases.

Race for RP Dedicates June to "Friends with Relapsing Polychondritis"

Retrieved on: 
Tuesday, June 4, 2019

Over the next four weeks, Race for RP will highlight the unique difficulties of RP sufferers.

Key Points: 
  • Over the next four weeks, Race for RP will highlight the unique difficulties of RP sufferers.
  • Recently, Race for RP released a poster to better help diagnose relapsing polychondritis, as well as a new video explaining the complexities of the disease.
  • Every Wednesday in June, Race for RP is publishing the story of an RP patient and asking their Facebook followers to take two simple actions: share that story publicly, and tag Race for RP.
  • Race for RP supports research, awareness programs, and cares for those who are affected by relapsing polychondritis ("RP") and related diseases.

Awareness-Raising on Steroids: Rheumatologists and Researchers in Illinois Help Make a One-in-a-Million Disease, Relapsing Polychondritis, the State's Top Google Search

Retrieved on: 
Thursday, May 30, 2019

Nationwide, the most popular disease Googled and the number-one search in sixteen states was HPV, which afflicts 79 million Americans.

Key Points: 
  • Nationwide, the most popular disease Googled and the number-one search in sixteen states was HPV, which afflicts 79 million Americans.
  • However, relapsing polychondritis was by far the rarest disease to be Googled, and topped Google's most searched list in Illinois, suggesting that something unique was taking place in that state.
  • While there, medical professionals who traversed the exhibition hall couldn't help but notice the booths of two organizations: RPASF and the Canadian Society for Relapsing Polychondritis.
  • Dr. Ferrada, an RP patient and one of the world's foremost experts in relapsing polychondritis explained the unique challenges RP patients face.

Primary Care Physicians Now Have Resources to Diagnose a Rare Autoimmune Disease: Relapsing Polychondritis

Retrieved on: 
Tuesday, May 21, 2019

Thanks to the Relapsing Polychondritis Awareness and Support Foundation (RPASF), that doctor now has the easy-to-understand, peer-reviewed resources to know that her/his patient may have a rare autoimmune disease.

Key Points: 
  • Thanks to the Relapsing Polychondritis Awareness and Support Foundation (RPASF), that doctor now has the easy-to-understand, peer-reviewed resources to know that her/his patient may have a rare autoimmune disease.
  • First described in 1923, relapsing polychondritis (RP) has been studied ever since, but, until recently,with limited progress.
  • Relapsing polychondritis is also a rare disease, making it unlikely that doctors will consider it, if they are even aware of it to begin with.
  • Race for RP supports research, awareness programs, and cares for those who are affected by relapsing polychondritis and related diseases.