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3/16/2015

Long Awaited Announcement From RPASF
Relapsing Polychondritis Awareness and Support Foundation announces plans to participate in NCAPG’s Autoimmune Research Registry (ARNet)

 

RPASF plans to participate in the new Autoimmune Research Registry, ARNet, a network of autoimmune disease advocacy organizations that will foster research into autoimmune Relapsing Polychondritis and related autoimmune conditions. The first goal of ARNet will be to reduce the time it takes to diagnose these diseases.

Researchers will be able to use ARNet to find out how many people are qualified to participate in their medical research projects. Note that RPASF will not be sharing any of our member data with the researcher. All participation is voluntary.

ARNet will be supported by grants from the American Autoimmune Related Diseases Association (AARDA), which will allow RPASF to participate at no cost to our organization or our members. We are grateful to AARDA and the National Coalition of Autoimmune Patient Groups (of which RPASF is a member) for providing us with the opportunity to collaborate with other disease advocacy organizations. We believe our understanding of autoimmune conditions such as Relapsing Polychondritis will greatly improve as a result of this effort.

Our Data Use Policy
How does the Relapsing Polychondritis Awareness and Support Foundation use your data?

  1. We remove your name, address, email, phone and any other data that can directly identify.
  2. We include information that would help determine whether you would be eligible for participation in research, including your age, sex, years with disease, symptoms, etc.
  3. The information you provide is used to let researchers count our members who might be eligible for consideration in research. For example, if we have 25 members who are eligible for research on Relapsing Polychondritis and you agree to participate in ARNet, you would increase that count by 1, so the researcher would get the number 26 instead of 25. It’s that simple.
  4. If you are eligible for a research study based on the information we have, RPASF will contact you and let you know about the researcher and the research.
  5. Then, and only if YOU decide to contact the researcher, that researcher will collect additional data from you to determine if you are eligible to participate in the research. At no point are you required to provide data you are not comfortable providing. Even if you decide to contact the researcher, you can decide not to provide your data.

RPASF may also use your data as part of our work to determine the prevalence of Relapsing Polychondritis.

Throughout this process, RPASF never gives your data to researchers.

Watch here for further developments!

 

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**AARDA and the NCAPG announce two important events for Autoimmune Disease Awareness Month:

 

  • The State of Autoimmune Disease: a National Summit on March 23, 2015 from 9:00-4:00 at the National Press Club in Washington, DC.   The summit will explore the current trends in diagnosis, treatment and therapies presented by experts in research, environment, advocacy and patient issues.
  • Congressional Briefing on Specialty Medicines: Access and Safety on March 24, 2015 from 9:00-11:00 at the Cannon House Office Building, Room 122. Experts will discuss top autoimmune issues including access to specialty medicines and biologics/biosimilars.

As active members of the NCAPG (National Coalition of Autoimmune Patient Groups) the RPASF will be in attendance for both of these events along with the Press, Congressmen, FDA Officials, The NIH and a host of other advocacy patient groups. The Summit on the 23rd will be a first for the members of the NCAPG so we are really looking forward to all the exposure to help raise Awareness for all autoimmune patient groups. It is also open to the public for free by registering at aarda.org (Limited Availability so Hurry)

 

 

 

 

 

Pat Kish Memorial

Pat Kish

Our RP Community is mourning the loss of one of our own. Patricia Kish was a loving wife, mother, grandmother, great grandmother and friend, who passed away from a long battle with Relapsing Polychondritis on February 20, 2015. A long-time member of our support groups, Pat was always there for others with encouragement, advice and her deep-caring spirit. She rarely asked for help for herself, but rather gave freely of herself to make the journey of others who are afflicted with this devastating disease easier and feel better emotionally and spiritually, with her daily encouragement.
As an example of this, here is a quote from Patricia to one of our group members, “You just need time and if the pain is too great you can pray and hope and love anywhere.” We miss Patricia, but she will always be in our hearts.
Patricia’s family has kindly designated the Relapsing Polychondritis Awareness and Support Foundation as the recipient of memorial contributions in her honor and memory. If you wish to contribute to this worthy cause, please select Donate  or checks can be made out to “RPASF, Inc.” and mailed with a notation “In memory of Patricia Kish” to RPASF, Inc. P.O. Box 369, Anoka, MN 55303

Pat Kish Memorial

 

 

 

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Our latest Relapsing Polychondritis research update from Dr. Jane Buckner Associate Director, Benaroya Research Institute
Director, Translational Research-Benaroya Research Institute at Virginia Mason.

 

Read the latest research updates on Relapsing Polychondritis

Update on Relapsing Polychondritis Research at BRI 9-21-14

 

 



Or by Check to:

RPASF, Inc.
PO Box 369 Anoka, MN 55303

 

 

 RPASF, Inc. joins Amazon Smile and eBay Giving Works

 

You can now support the Relapsing Polychondritis Awareness and Support Foundation, Inc. at little or no cost to you by linking to us in their Charitable Giving Programs. Here’s how it works!

Share a Smile With Us on Amazon Smile

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  • Amazon donates 0.5% of the price of your eligible AmazonSmile purchases to the RPASF, Inc.
  • AmazonSmile is the same Amazon you know. Same products, same prices, same service.
  • Support the RPASF, Inc. by starting your shopping at smile.amazon.com

 

Partner up with us on eBay Giving Works

 

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eBay Giving Works
The combination of PayPal Giving Fund’s nonprofit expertise, plus eBay’s active global community, forms the eBay Giving Works program. It allows sellers to give proceeds from their sales to a favorite nonprofit, and helps nonprofits raise funds by selling on eBay too. Nonprofits can also receive donations on eBay through Donate Now which lets anyone with a PayPal account donate to nonprofits right away –without buying or selling anything.

 



 Or by Check to:

RPASF, Inc.

PO Box 369 Anoka, MN 55303

 

 

 

 

Pediatric

Check It Out
Our Latest Outreach Support Group

Pediatric Relapsing Polychondritis (Closed Group)


https://www.facebook.com/groups/352506518232793/

RP (Relapsing Polychondritis) is a rare, chronic, aggressive, incurable condition. It is thought to be an autoimmune disease, but it is also thought to begin in mid-adulthood. We KNOW that RP is NOT only a disease in adults. It is now known, especially by these members, to be diagnosed as early as infancy.
This group is designed for parents, family members and caregivers of CHILDREN with RP. We also welcome those whose child(ren) are now grown, but were diagnosed as a child. These very special families need each other for help, support, ideas, answers, advice and – of course- the very many questions.
We appreciate that you are here to help each other. As an outreach group of the Relapsing Polychondritis Awareness and Support Foundation (RPASF, Inc.), we also encourage you to visit and like our Facebook page at:

https://www.facebook.com/polychondritisawarenessandsupportfoundationinc

 Pediatric


RPASF, Inc
Relapsing Polychondritis Brochures

 

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All content of this web site, such as text, graphics, images, or any other material contained in this website are for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We cannot and do not give you medical advice.If you think you may have a medical emergency, call your doctor or 911 immediately. The Relapsing Polychondritis Awareness and Support Foundation, Inc is a nonprofit 501(c)3 corporation. Donations are tax deductible as allowed by law.
 
 
 
 
 
 
 

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