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Patient Support

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.

Support Groups

RPASF Announces a New Program to Help Relapsing Polychondritis Patients Participate in a Research Study at the National Institutes of Health (NIH)

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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!

Global Genes

Educational resources that provide critical information on various topics within the rare disease landscape, some of which include:
  • 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
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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