1 / 11

Spondylitis Association of America

Spondylitis Association of America. 20 Years of Setting the Course. A History of Firsts. First US symposium for AS patients (1984) First US symposium for health professionals (1984) First comprehensive book for patients, Straight Talk on Spondylitis (1985)

raven-dejesus
Download Presentation

Spondylitis Association of America

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. Spondylitis Association of America 20 Years of Setting the Course

  2. A History of Firsts • First US symposium for AS patients (1984) • First US symposium for health professionals (1984) • First comprehensive book for patients, Straight Talk on Spondylitis (1985) • First pamphlet on Juvenile AS (1989) • First Spanish language pamphlets for AS in U.S. (1992)

  3. PsA Patient Survey • 60% diagnosed within the last 10 years. • 90% reported that the arthritis has been more difficult than the psoriasis • Biggest challenges: chronic fatique, physical limitations, chronic pain • Most important issues: educating doctors to make early diagnosis, treatments

  4. Collaborations • Co-founded the AS International Federation (ASIF) (1988) - helped 24 countries establish AS organization • Co-sponsored a 4-day international research symposium with UT Texas/Dallas (1990) • Co-sponsored a 2-day conference with NIH - 70 scientists from diverse fields (1998)

  5. AS Family Genetic Project (NIH - UT Houston) • Vision: to accelerate research • First project - AS Family Genetic Project • Raised $150,000 start-up funds • Partnered with Dr. Reveille, UT Houston • Formed NASC - a consortium of 10 university medical centers and SAA • NIAMS funding - $5.5 million grant • SAA’s Role: 1) recruitment & screening site, 2) designated as clinical coordinating center

  6. “Never before has NIAMS funded an on-going study with a patient-advocacy organization acting as the coordinating center. It’s SAA’s ability to reach families which is critical for the success of this exciting project.” Susana Sztein, M.D.Chief of Rheumatic Diseases Branch NIAMS

  7. AS Life Impact Study (Industry) • A survey of AS patients’ experiences and needs • Conducted by Harris Interactive (the Harris Poll) • Accepted for podium and poster presentations at ACR 2003 • Being prepared for publication

  8. AS Guidance Document for Industry (ASAS) • Facilitated the development of an AS Guidance Document for submission to the FDA in June 2003. • SAA’s Role: 1) Participation in the selection of the steering committee 2) Project coordinator for meeting in D.C. 3) Obtaining sponsors 4) PR Role

  9. SpA-US Working Group (to be named) • SAA’s role: 1) Represented on the steering committee 2) Project coordinator for the organizational meeting held in August, 2003 3) Obtaining sponsors

  10. Lessons Learned Stay focused on our common goals 1. Together, clarify goals 2. Together, develop a written plan, timetable and milestones 3. Delineate responsibilities and policies (Define what each partner will and will not do.) 4. Communicate, communicate, communicate

More Related