We the foundation members have created this page for all of you – fellow RPer’s, family members, friends, and rare disease and chronic illness sufferers alike – in our movement for awareness and continual education and support in helping to conquer this disease. Please visit our Facebook page, like it and share it. This is where you will find any news, updates from the foundation, information about all sorts of related Polychondritis issues, Foundation Questions Asked and Answered, and more. We encourage your feedback and active participation, as without you, our journey cannot continue moving forward.
RP-Relapsing Polychondritis Awareness & Support (U.S. Based)
Relapsing Polychondritis (RP) Awareness (UK Based)
Relapsing polychondritis NL (The Netherlands)
Pediatric Relapsing Polychondritis
Rezidivierende Polychondritis (Germany)
Holistic Relapsing Polychondritis
Relapsing Polychondritis Info Sharing
Member Support Groups on Yahoo – 1
Member Support Groups on Yahoo – 2
On Twitter @RPASF
(If you are a support group admin and your group is not represented here, please contact firstname.lastname@example.org)
RPASF Announces a New Program to Help Relapsing Polychondritis Patients Participate in a Research Study at the National Institutes of Health (NIH)
RPASF is pleased to announce a new program at the Friends of Patients at the NIH (“Friends at NIH”), which will directly benefit relapsing polychondritis (“RP”) patients, their families and advance RP research at the NIH in Bethesda, Maryland.
By using the link below to donate directly to this new program, you will help those who cannot afford to participate in the relapsing polychondritis research: http://bit.ly/2tNQQN4
This Friends at NIH program is independent of RPASF and separate from Friends at NIH’s general donation account. In other words, this program has been specifically designed to help RP patients and families and RPASF will not receive any portion of these donations.
As posted on RPASF’s website, the NIH is currently evaluating and testing patients with RP.
The Friends at NIH is a nonprofit organization that touches patients’ and their families’ lives by providing:
- Shelter at or near the NIH during the evaluation and testing process;
- Support systems including family and caregiver travel costs back and forth to the NIH; and
- Quality of life to take some of the stresses off, like a meal when they arrive on Sunday to start a week of difficult evaluations and testing.
Thank you for your compassionate support of RP patients, their families and research. It is greatly appreciated!
- Parenting a Child With a Life-Limiting Illness
- Genetic Testing: Is This My Path to a Diagnosis?
- Using Storytelling to Raise Awareness For Your Rare Disease