Organizations
American Autoimmune and Related Diseases Association, Inc. (AARDA)
19176 Hall Road, Suite 130
Clinton Township, MI 48038
(586) 776-3900
(800) 598-4668
aarda@aarda.org
aarda.org
Autoimmunity Institute
Allegheny Health Network
West Penn Hospital
4800 Friendship Avenue
Pittsburgh, PA 15224
(412) 578-3511 Main Line
Autoimmunity Institute Secondary Line
(833) 242-8246
Benaroya Research Institute at Virginia Mason
1201 Ninth Avenue
Seattle, WA 98101-2795
(206) 342-6500
info@BenaroyaResearch.org
BenaroyaResearch.org
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.
The Canadian Society for Relapsing Polychondritis
1179 Westerra Link
Stony Plain, AB
CANADA
T7Z 2Z4
polychondritis.ca
Global Genes
World Headquarters
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
(949) 248-7273
globalgenes.org
National Institute of Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health (NIH)
Marcela A. Ferrada, MD
9000 Rockville Pike
Building: 10, Room: 2C145
Bethesda MD 20892
(301) 356-5068
marcela.ferrada@nih.gov
niams.nih.gov
National Organization for Rare Disorders (NORD)
Headquarters
55 Kenosia Avenue
Danbury, CT 06810
(203) 744-0100
(800) 999-6673
rarediseases.org
Arthritis Treatment Center
David J. Klashman, MD
23441 Madison Street, Suite 340
Torrance, CA 90505
(310) 373-0340
RP Foundation
1202 Lexington Avenue
Box 112
New York, NY 10028
Federal Tax ID 46-2458916
National Institutes of Health Study
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.
If you are interested in participating or learning more about the study, please call (301) 356-5068, Monday – Friday from 9 am – 5 pm. All potential participants will undergo a screening process to determine if they satisfy the conditions for study participation.
Helpful Videos
The Race for RP strongly believes in the importance of sharing information to raise awareness and provide support for those suffering from relapsing polychondritis, and its related diseases. Here you will find a selection of videos that are equally informative to those learning about this disease as they are helpful to patients suffering from RP. Though we are rare, we are not alone.
Dr. Buckner discusses relapsing polychondritis and autoimmune diseases
Dr. Jane Buckner, MD is a Rheumatologist and President of the Translational Research Program at the Benaroya Research Institute at Virginia Mason, which focuses on finding cures for autoimmune diseases. She has extensive experience working with patients suffering from Relapsing Polychondritis, (RP) and is acutely aware of the problems patients and their doctors face in diagnosing and treating RP.
Dr. Ferrada is on the front lines fighting against relapsing polychondritis as a medical professional and patient
Not only is Dr. Marcela A. Ferrada, MD is a highly respected clinical fellow at the National Institutes of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases, she is also a relapsing polychondritis patient herself. Dr. Ferrada is one of the strongest advocates raising awareness and driving research and studies into improved diagnosis, treatment and prevention of RP and a better understanding of this and other autoimmune diseases.
From Allergy to Autoimmune Disease: How BRI Fights Them All
BRI is studying how the immune system remains balanced to keep us healthy and what causes the immune system to become unbalanced in cases of allergies or autoimmune diseases. BRI’s hope is that through these investigations they can advance diagnosis and treatments to prevent these diseases from developing.
Research & Publications
Clinical Presentations of Relapsing Polychondritis: More Than A Swollen Ear
Airway Findings in Patients with Relapsing Polychondritis
An International Consensus Exercise to Develop Candidate Items for Classification Criteria
Clinical Implications of Ultrasonography (US) in Monitoring Disease Activity of RP
Children with RP are likely to be seen in the emergency room prior to establishing the diagnosis.
Refractory Relapsing Polychondritis: challenges and solutions