The National Institutes of Health (NIH) is interested in studying patients with Relapsing Polychondritis (RP)

Dr Ferrada appointed Federal Laison to RPASF by the National institutes of Health (NIH), National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS) division

We are pleased to announce that Dr Marcella Ferrada has been appointed as official Federal Laison to the Relapsing Polychondritis Awareness and Support Foundation on behalf of the NIH, NIAMS division to serve as spokesperson for NIH policies and programs. Also, serving as Medical Advisor to the Relapsing Polychondritis Awareness and Support Foundation including giving Grand Rounds to academic and medical institutions.

Read the Directive Here

National Institutes of Health (NIH) letter accepting RPASF’s gift of $20,000

The Relapsing Polychondritis Awareness and Support Foundation, Inc. (RPASF) is pleased that the NIH has accepted its gift of $20,000, which will be used to support research on relapsing polychondritis (RP).

The gift was made possible by a partial research grant from the American Autoimmune Related Diseases Association, Inc. (AARDA), which was matched by RPASF.

We are pleased to facilitate RP research and are most grateful to AARDA, the NIH, and RPASF’s donors, advocates and supporters.

The relapsing polychondritis research team at NIH (including Dr. Peter Grayson, Dr. James Katz, Dr. Marcela Ferrada, Dr. Keith Sikora, Research Nurse Specialist Wendy Goodspeed, and their colleagues) are incredibly skilled, keenly focused and doing amazing things for our community. 

On behalf of RPASF, thank you all!

Tom Christie

Chair/CEO




  or donate via mail to:

RPASF, Inc.
8843 78th St NW
Annandale, MN 55302

KYLE MARCELLI’S
2017 LAUNCH VIDEO

SAVE THE DATE 5.12.17
TWILIGHT RIDE FOR RP
MAZDA RACEWAY LAGUNA SECA




Kyle Marcelli & Nancy tear up the track at Laguna Seca as they #Race For RP

RPASF Addresses the Importance of Patient Data and its Applications
During Autoimmune Disease Awareness Month (ADAM)

Our own CEO Tom Christie and our Medical Advisor Dr. Marcella Ferrada are joining efforts this March 27th and 28th in Washington DC starting at the annual meeting of ADAM titled “Autoimmunity: Yesterday, Today and Tomorrow” on Tuesday, March 28 at the National Press Club’s Holeman Lounge. Both Tom and Marce will be joining together on stage discussing the impact and importance of patient data and patient registries to a full house of professionals at the Press Club.

The following day, Tom will address the annual meeting of the American Autoimmune Related Disease Association (AARDA), National Coalition of Autoimmune Patient Groups (NCAPG). He will be discussing the NCAPG’s rollout of their new, first ever Autoimmune Patient Registry, ARNet in which Tom played a major role in its development. He’ll be showing the power of having patient data available for researchers to query to find patients for studies or trials. And time permitting he will show some live demo’s to those interested. A BIG thank you to AARDA for making this important trip possible!!

You can read the press release here:
http://bit.ly/2nxWNv2

Dr. Marcela Ferrada at Johns Hopkins University

Events

May 21-23, 2017: American Thoracic Society International Conference, Washington, DC

May 12, 2017: Twilight Ride for RP, Mazda Raceway Laguna Seca, Salinas, CA 93908

May 17, 2017: Pediatric Rheumatology Symposium, Houston, TX

July 8, 2017: Autoimmune Walk, Ephram White Park, Bowling Green, KY

September 14 -15, 2017: RARE Patient Advocacy Summit, Irvine, CA

November 3-8, 2017: American College of Rheumatology Annual Meeting, San Diego, CA

November 18, 2017: 3rd Annual Los Angeles Autoimmune Walk, Culver City, CA

Visit our Media Library

To receive a hardcopy of the brochure, please sent your request to admin@polychondritis.org.

Mailing Address

RPASF, Inc. , 8843 78th St NW,  Annandale, MN 55302