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Do You Believe in What Can Happen or Are You Just Happy with Your Life?

 

You, our supporters of over the last three years, have been promised that RPASF will make a difference in the world of rare and autoimmune diseases, whom researchers have yet never paid any attention to like lil ole us, RP Patients. it’s my greatest yet most humble honor to make the following announcement, with thanks to Dr. Marcela Ferrada, our adviser from the NIH.

For the first time ever to our knowledge, Relapsing Polychondritis will be a presenting topic at Grand Rounds at several Universities. Dr. Ferrada our adviser from the NIH will be conducting Grand Rounds with doctors and students from the fields of Pulmonology, Internal Medicine, Rheumatology, Radiology, Genetics and even perhaps some others to be conducted at Institutions like Georgetown University, Mount Sinai, Johns Hopkins, University of Miami and Brown University.

As this…and MORE… is in the development stages, the only thing I can say right now is that any support you can give to our upcoming needs will go toward sponsoring a patient, who will hopefully to be able to be involved in what we all know is much-needed research. Right now is crucial!

Over the course of the next few months we need to raise $30,000, or $3,000 Per patient to fund them for this research. If you can’t help us monetarily, that’s okay, perhaps you’ll become a participant in the studies. That’s a great opportunity and possibility also. Either way, it’s your way to show you really mean that you believe that there is an end to this madness we call RP. This is not a hope or a dream, it’s fact, something we’ve waited so long for.

Believe in the dream.

Tom Christie,

Chair/CEO

RPASF,inc

Help us now to help us support our friends in their willingness to help

 

 

 

 

AARDA_ARNet_logo

 

Autoimmune Research Network (ARNet) Update

http://www.polychondritis.org/ARNet

RPASF, Inc. is pleased to announce that ARNet is ready for member enrollment.

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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