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Announcing Our

2015 Advocacy Tour – (aka Road Trip)
“Progress with a Purpose”

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Greetings from everyone here at RPASF! It’s that time of year again for our Chairman and CEO, Tom Christie and this time with a little help to take to the roadways to advocate on behalf of those affected by RP. Forming alliances with other rare disease organizations and strengthening relationships with legislators will set the framework needed to galvanize change in the rare disease community.

Again the schedule is a full one as Tom begins to organize his agenda. Here is a list of items, meetings and summits in store for his continued rare and autoimmune advocacy work.

  • Beginning in August Tom, Carla Bob and other members of RPASF will be participating in RDLA’ s In-District Lobby Days, where we will have face-to-face meetings with Members of Congress. These meetings provide us the invaluable opportunity to make our voices heard, share our stories, and discus important issues we all face living with a rare disease. We also encourage you to join in at: http://rareadvocates.org/
  • Next on the itinerary Tom will fly to Washington, D.C. where Carla Bob and he will attend AARDA’s National Coalition of Autoimmune Patient Groups’ (NCAPG) Annual Planning Meeting.
  • Tom will then return home to Minnesota while Carla will be attending the EveryLife Foundation’s Annual Scientific Workshop “Incorporating the Patient Perspective in Rare Disease Drug Development.” In DC.
  • On September 24th thru the 26th Tom will fly to Huntington Beach, California to attend Global Genes 4th Annual RARE Patient Advocacy Summit and Tribute to “Champions of Hope” Gala, of which Tom was a nominee for Rare Champion of Hope in Advocacy. He will be joined there by our own Lisette Arriola, Patient Advocate who lives close by!
  • Tom will then remain in California for a few days to make further plans and preparations for an exciting event that is currently in development for some time in November. Watch for more details to be released soon on that one!
  • After a break for the holidays it’s off to Rare Disease Week again joining Carla in the activities on February 24th thru 29th in Washington DC. The agenda is yet to be set but if it’s anything like last year where we wrapped it all up at the NIH, it’s going to be one hectic week of meetings on the hill and in committees.

 

  • For March Tom’s off to Washington DC again AARDA’s National Coalition of Autoimmune Patient Groups’ (NCAPG) 2nd Annual Summit Meeting where the year in review and activity summaries will take place along with the media and congressional committee members.

Last year’s generosity and support for Tom’s Road Trip helped make it a complete success allowing us to attend every event scheduled thanks to you and your help. Please consider making a donation to this year’s 2015 Advocacy Tour to help us with the costs of airfare, hotel accommodations, food, and local transportation. Please help by making a tax-deductible donation by click on “Donate” below.



Or By Mail To:

PO Box 369 Anoka, MN 55303

 

 

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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.

 

Awakening the World to Our RP Challenges

Living a Life with Purpose: A Milestone Celebration

June 4, 2015

The Relapsing Polychondritis Awareness and Support Foundation (RPASF) is proud to present the long-awaited documentary “RP The Ride of My Life”. This is a compelling story of one woman’s courageous journey which focuses on the tremendous challenges, disappointments, hopes, and dreams of Living a Life with Purpose while suffering from the rare disease Relapsing Polychondritis. RPASF has made monumental strides in the last two years furthering its mission of advocating increased awareness, education, and support for those affected by RP. As we introduce the world to our RP challenges, we believe this story will provide us with the instrument needed to make our voices heard in the rare disease and medical communities around the world.

 

Presenting in its entirety:

“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

 

 

 

 

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