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Well, as we promised you all. Our talking is over. The last couple of months has been about things we strive for every day which are are becoming reality. It’s time for action. This is just the first of many studies promised you in our ongoing involvement moving forward to find what this disease is all about. No simple task for sure.

First of all, here is our first abstract is about Asthma and how it can mimic RP. submitted to the American Thoracic Society. by Marcela A. Ferrada1, Dante Suffredini1, Adrien Mazer1 and James D. Katz2

1Critical Care Department, National Institutes of Health, Bethesda, MD.  2National Institute of Arthritis and Musculoskeletal and Skin Diseases, Bethesda, MD

My friends, I have no better way to prove our words than by our actions. Those of you who feel totally helpless and have given up, we want to help. For those of you who feel there is a glimmer of hope for you and your family, we’ll try to help you every way we can. For those of you who believe that this is something bigger than life itself and needs to be an importantyour participation, your involvement is crucial, and those of you who can lend your monetary support, simply put, we need it.

Thomas Christie, Chair/CEO
The Relapsing Polychondritis Awareness and Support Foundation, Inc.
tchristie@polychondritis.org
612.296.1628



ARNet is run by the American Autoimmune Related Diseases Association, Inc. (AARDA) in collaboration with the National Coalition of Autoimmune Patient Groups, (NCAPG), of which RPASF is a member. ARNet aims to empower patients by facilitating their participation in research on Relapsing Polychondritis and associated autoimmune diseases. Our participation in research by academic medical centers, research institutes, pharmaceutical, and biotech companies will have an enormous impact by:

  • Developing new tests to reduce the time it takes to diagnose RP
  • Discovering new treatment protocols, and even cures, for autoimmune diseases
  • Expanding scientific knowledge of the immune system

We are grateful to AARDA for the opportunity to join other patient advocacy groups in order to help researchers attain a more comprehensive understanding of those affected with RP and associated autoimmune diseases.

The ARNet Survey, as well as data sharing policies, participating patient advocacy groups, and FAQ’s, can be found on our exclusive ARNet webpage: http://www.polychondritis.org/ARNet. Participation is completely voluntary and there is no cost to you. Please visit this webpage for further detailed information and for the link to enroll in the registry. Thank you.

 

 

“RP The Ride of My Life”

     A documentary about Relapsing Polychondritis, a rare autoimmune disease.

RP The Ride of My Life - TrailerClick Here to go to the video

Above is the link to this important video documentary, which has been donated by a special RP friend (patient; survivor).

On behalf of RPASF, we thank Nancy who made this documentary available to us and salute her for her generosity and courage to share her RP story.

For more information please contact us at: rideofmylife@polychondritis.org

Please enjoy the documentary and envision a large, open door to lead us on our journey together to awaken the world!

 

 
Won’t you please help us achieve our purpose by making a donation now?



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