Whether you’re newly diagnosed, an experienced patient, or a spouse or family member, we’re here to help you find the resources you need.
The Relapsing Polychondritis (RP) Foundation was founded by RP patients. We know firsthand what it means to live with this disease and to advocate for quality care. Our overview brochure outlines the basics of RP to help raise awareness and includes contact information for international patient support groups.
Learn about institutions, programs, and studies currently providing RP patient services and opportunities to participate in research. We’ll continue to update this curated list as new opportunities and partners emerge.
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.
Address:
AHN Autoimmunity Institute
Allegheny Health Network
West Penn Hospital
4800 Friendship Avenue
Pittsburgh, PA 15224
Website:
https://www.ahn.org/services/medicine/autoimmunity.html
Main Line: (412) 578-3511
Secondary Line: (833) 242-8246
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.
Address:
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health (NIH)
9000 Rockville Pike
Building: 10, Room: 2C145
Bethesda MD 20892
Website: niams.nih.gov
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 NIAMS/NIH goodspew@mail.nih.gov
The RP Foundation has established a fund to support the Friends of Patients at the NIH program (“Friends of Patients”). The fund directly benefits relapsing polychondritis (“RP”) patients and their families and advances RP research at the NIH in Bethesda, Maryland.
The Friends of Patients program helps RP patients and their families by providing:
If you’d like to support the RP Foundation’s Friends of Patients program, please make a gift to the RP Foundation at give.polychondritis.org. Please denote “Friends of Patients” in the comment line.
Thank you for your compassionate support of the RP patients and families we serve. It is greatly appreciated!
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
NIAMS/NIH
goodspew@mail.nih.gov
Website: www.friendsatnih.org
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.
Address
1201 Ninth Avenue
Seattle, WA 98101-2795
Phone: (206) 342-6500
Email: info@BenaroyaResearch.org
Website: BenaroyaResearch.org
The Penn Relapsing Polychondritis Center provides comprehensive treatment for patients with RP. It’s one of the few academic centers in the world that both sees many patients with RP to provide outstanding personalized clinical care and conducts research to advance our understanding of RP. It has a unique research program that combines the strengths of the Vasculitis Clinical Research Consortium, the U.S. National Institutes of Health, and the Relapsing Polychondritis Foundation.
Address
Perelman Center for Advanced Medicine
South Pavilion, 1st Floor
3400 Civic Center Boulevard
Philadelphia, PA 19104
Phone: (215)-614-4417
Website: med.upenn.edu
A key way to raise awareness for RP is to talk about it. Listen to recent episodes from a range of podcasts that feature patients, researchers, and doctors discussing RP and the latest efforts to treat and cure it.
Through the synergy of our partnerships, we’re reimagining RP-centered research and patient care. We’re always looking for innovative partners and targeted collaborative opportunities that drive real results for patients and families living with RP and other autoimmune diseases.
Until recently, there were few options and even fewer resources for patients living with RP. We’re working every day to unlock the mysteries of RP and deliver hope to patients and their families.
