Whether you are a newly diagnosed patient, spouse or significant other, parent or other family member of a patient, we are here to help.
We are a patient-founded and patient-driven 501(c)3 non-profit foundation which strives to raise awareness about relapsing polychondritis and educate the public, as well as represent patients to the global medical community and support medical research toward a cure.
The Autoimmunity Institute is the first of its kind in the world which provides comprehensive care to patients suffering from a wide range of autoimmune diseases. The AHN Autoimmunity Institute combines multispecialty care with cutting-edge research, patient education and advocacy to advance the treatment of autoimmune diseases and accelerate discovery of cures.
The National Institutes of Health (NIH) is studying patients with Relapsing Polychondritis (RP). Adult and pediatric patients are invited to come to the NIH in Bethesda, MD to participate in a research study. The purpose of the study is to observe how RP affects you and to collect blood samples for research. All patients will receive a comprehensive clinical evaluation by physicians with experience caring for patients with RP. Specific treatments will not be offered as part of study participation, but recommendations will be provided to your regular doctors as appropriate. All potential participants will undergo a screening process to determine if they satisfy the conditions for study participation.
RP patients who would like to have appointments at NIH and be considered for support from the Friends of Patients at the NIH should contact:
Wendy Goodspeed, RN
Research Nurse Specialist
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!
Benaroya Research Institute at Virginia Mason (BRI) is one of the few research institutes in the world dedicated to discovering causes and cures to eliminate autoimmune and immune system diseases. At BRI, their scientists aren’t focused on eliminating one or two autoimmune diseases – they’re taking on all 80. And their slogan rings true, as progress against one autoimmune disease is progress against them all.
You can help move RP research forward by simply donating a blood sample to a biorepository. Go here for more information or call (877)202-5200.
1201 Ninth Avenue
Seattle, WA 98101-2795
If you are a support group admin and your group is not represented here, please contact firstname.lastname@example.org.