RSDSA's
2006-2007 Achievements
The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
fields calls every day from people who want to know as much
as possible about the syndrome, its treatment and how to manage
chronic pain. They keep us focused on our mission and remind
us of the devastation caused by the pain and disability associated
with CRPS. These calls, as well as e-mails from our constituents,
drive our agenda and we are continually amazed at what a small
but focused group of people are able to accomplish.
RSDSA has several works in progress that will be completed
before the end of 2007. Some of the most significant are:
- We published a Brochure
of Hope, a compilation of stories for and about
our members that illustrate positive outcomes of people
who suffer from CRPS.
- We are producing a DVD that will instruct physical
and occupational therapists how to restore function in people
with CRPS.
- In conjunction with Emory University, we held a one-day
CME-accredited conference for healthcare professionals
on the diagnosis and treatment options for CRPS.
- We participated in Achilles Walks for Hope and Possibility in New York and Atlanta. We held another independent fundraising walk in Minneapolis, an offshoot of the previous year's Achilles Walk there. Over the past three years, RSDSA has raised $117,000 for research through the Achilles Walks.
Our 2006 Achievements
- An increased membership of more than 7000
- Launched an innovative program to help members appeal
when care is denied. Our consultant provides the insurance
corporation's medical director with a copy of our CRPS Clinical
Practice Guidelines and pertinent medical articles published
in peer-reviewed journals. She also advises us on strategy
to help others with CRPS avoid similar denials.
- Published the RSDSA
Digest, a compendium of medical and treatment
articles that had been published in the RSDSA Review. This
is distributed at medical conferences and given to all new
members.
- Updated In
Pain and Agonizing About the Bills,
a resource directory for people with CRPS who suffer
financial devastation. This directory is "live"
on the Internet and is also available in hard copy. We distribute
it at medical meetings and to crisis hotlines, libraries,
State Department of Social Services, and other referral
sources. We recently mailed the directory on a CD-ROM to
3,000 members of the American Pain Society.
- Published the 3rd edition of The
Clinical Practice Guidelines.
These evidence-based Guidelines are being distributed to
healthcare and insurance professionals and are also available
on the website and in CD-ROM format
- Wrote, published, and distributed Working
Together, Ensuring a Brighter Future, a newsletter
for the insurance industry. RSDSA exhibited at two conferences
for insurance risk managers in 2005.
- Worked with the American Academy of Pain Management on
a special CRPS issue of The Pain Practitioner
(a quarterly magazine). It was mailed to the Academy's 5000
members and distributed at medical conferences and meetings.
- Since 1993, RSDSA has funded $1,043,840 in fellowships
and research grants.
2005 Achievements
-
Created an online survey to collect epidemiologic and
clinically relevant information from people with CRPS.
-
Published the brochure, CRPS
and Sports Injuries: Prevention is the Name of the Game,
to educate patients, healthcare providers, athletic trainers
and coaches to the signs and symptoms of this horrific
syndrome.
-
Funded and wrote newly-revised Clinical
Practice Guidelines to be distributed to healthcare
providers and insurance carriers in print and via the
web.
-
Published a newsletter
for risk managers.
-
Created some new awareness tools, including posters
that can be downloaded from the website.
-
Continued to update and build a high-quality website
that attracts more than 40,000 visitors each month.
|
