Who’s walking the walk?
RPASF IS GETTING ONE STEP CLOSER ON NOVEMBER 8, 2015
RPASF IS THE PRESENTING SPONSOR OF THE INAUGURAL LOS ANGELES 1 MILE WALK
IN ALLIANCE WITH AARDA
WE NEED WALKERS, SPONSORS AND SUPPORT TO HELP FIGHT RELAPSING POLYCHONDRITIS
REGISTER OR SPONSOR UNDER
Team Relapsing Polychondritis (“RP”)
L.A. Walk Ambassador – Haley Ramm
(“Chasing Life”, ABC Family)
Other celebrities to join!
A Request from the Genetic Alliance
You have a story to tell. Your experiences finding care, information, and support can be used to improve care for yourself and other families.
A group of nonprofits and the federal government (Genetic Alliance, the American College of Medical Genetics (ACMG) and the Health Resources and Services Administration) are conducting a survey on access to and the quality of genetic services. Your answers to the survey below will help create a meaningful message about what is needed to improve genetic services and the overall health care experience for individuals with genetic conditions and their families.
You can complete the survey at the following link: https://www.surveymonkey.com/r/ImprovingGeneticServices
To be eligible, respondents must live in the United States and have been told by a doctor or other health care provider that they (or their child) have a genetic condition. The deadline to submit survey answers is Wednesday, October 28.
If you have any questions about the survey or use of the data, please contact Sharon Alexander, Program Manager at email@example.com. This project has been approved by Genetic Alliance’s Institutional Review Board (IRB) to protect all survey respondents and ensure that all responses will be kept confidential.
2015 Advocacy Tour
Most “regular” RP’ers don’t pay that much attention to these road trips aka Advocacy Tours and meetings in DC and beyond, however it’s allowing RP to be recognized much more easily, forming alliances with other autoimmune organizations which will make such an important impact for the future.
- It’s TIME for early diagnostic procedures to be available for RP
- It’s TIME for advanced medical research with government funding
Just 2 years ago words like Advocacy Tours, RP and the Media as well as Congressional Committees were unheard of in our RP world.
- It’s TIME for science to research to find a cause and a cure for RP
- It’s TIME for the entire nation to know the meaning of RELAPSING POLYCHONDRITIS
There is a certain solidarity growing amongst the rare disease communities. A sense of urgency, a sense of oneness together with our fellow rare disease patients. With 30 million of us we can move mountains but we must unite and work together as one.
- It’s TIME to BRING PEOPLE, HOPE AND SCIENCE TOGETHER
- It’s OUR TIME, Our lives, Our future!!
We are on tour, a mission, to insist on more recognition of rare diseases, demanding funding for research, pressing for FDA approved drugs specifically for autoimmune diseases including Relapsing Polychondritis, exercising our right to tell their story of the impact of this dreadful, relentless disease affecting their lives and OURS. They are voices for US, Advocating for US, across the US.
What many people do not realize is THIS CAN’T CONTINUE without your continued loyal support. It doesn’t matter how much or how little you can help, every penny goes to keep moving this cause, OUR cause forward.
It is our TIME!! WE CAN DO THIS TOGETHER!!
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. ANY DONATIONS are accepted. (Gift cards, coupons, airline miles, hotel discounts or certificates, restaurant gift cards, car rental fees, any amount of cash is accepted as well). Please help by making a tax-deductible donation by click on “Donate” below.
Autoimmune Research Network (ARNet) Update
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.
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: firstname.lastname@example.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?
Relapsing Polychondritis Brochures
Download A FREE Copy Of Our Brochure Here
Contact Us @ email@example.com Or By Mail PO Box 369 Anoka, MN 55303