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 And the Beat Goes On!!

NAIMS

Our thanks go out to Sara a rheumy fellow at the NIH who presented our case for RP to the (National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) www.niams.nih.gov/ during their recent retreat (Wearing our T-Shirt). Just another showing of the support we are receiving and continue to hope to receive. Nothing anywhere like this has
EVER been submitted to any research facility anywhere for RP. But for us to continue to do our work, to be bluntly honest takes money, money we receive from you no matter how small or how large, it all comes down to if Sara can do this to help us what can you do to help? You may make your donation below.

 

Upcoming  Grand Round Events

Relapsing Polychondritis. 90 Years of Therapeutic and Diagnostic Challenge

 

Hope-Landing-Page

Greetings,

One of goals and commitments we made to you as a part of our efforts is to not only reach out to the RP community but to the medical community as a whole and we are doing just that. Thanks to Dr. Ferrada who has single handedly compiled the following Grand Rounds engagements at the hospitals listed below. The Topic:

“Relapsing Polychondritis. 90 Years of Therapeutic and Diagnostic Challenge”

Dates and Locations

  • June 15 Washington Hospital Center, Washington DC (Rheumatology GR).
  • July 15 Mount Sinai, Miami, FL (Medicine GR- 8:00 am) and University of Miami, Miami FL (Rheumatology GR-1:00pm). Two in one day!!
  • July 28 Providence Hospital, Washington DC (Medicine GR)
  • October 14 Virginia Commonwealth University, Richmond VA (Rheumatology GR)
  • November 2 Brown University, Providence, Rode Island (Medicine GR)
  • November 17 George Washington University, Washington DC (Medicine GR)

As you can see we are diligently working all avenues available to us from every angle we can, we are quickly working our way in with the people who are the real deal and can get things done for us. Relapsing Polychondritis is earning a name for itself, something we’ve never experienced before and will continue to pursue.

Honestly, donations are way down over the past few months. I want you all to know that right now we need your help if we are to keep this ball rolling, so if you believe in us or believe that there are treatments and eventually a cure out there could you please help by lending us your tax deductible support now.

Thanks for everything you do,

Tom

Grand Rounds Definition: A formal meeting at which physicians discuss the
clinical case of one or more patients. Grand rounds originated as part
of residency training wherein new information was taught and clinical
reasoning skills were enhanced. Grand rounds today are an integral component
of medical education. They present clinical problems in medicine by focusing
on current or interesting cases. They are also sometimes utilized for 
dissemination of new research information.



Or by mail at RPASF

PO Box 369 Anoka, MN 55303

 AARDA_ARNet_logo

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?



 Or By Mail – PO Box 369 Anoka, MN 55303

RPASF, Inc
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