Starting in February 2009, the Sjögren’s Syndrome Foundation began a nationwide mailing to reach every rheumatologist in the United States registered with the American College of Rheumatology (ACR).

As many Sjögren’s patients know too well, much of the medical community is vastly underinformed about the latest Sjögren’s news and treatments. That is why we have partnered with ACR to help raise awareness with rheumatologists in the United States.

Over 9,000 rheumatologists across the country will receive a letter informing them about the activities of the Foundation, noting our committment to research and advocacy. In addition, enclosed with the letter is a copy of the latest issue of the Sjögren’s Quarterly — our professional newsletter — as well as a copy of our What is Sjögren’s Syndrome? brochure. Both the Quarterly and all of our brochures are available free-of-charge to any healthcare professionals in the United States.

Since beginning the mailing, we have been inundated with replies from doctors asking ot receive more materials and be subscribed to the Sjögren’s Quarterly

So at your next doctor's visit, ask your rheumatologist if they have received this letter from the SSF. And if not, make sure they contact the Foundation office to receive their complimentary educational materials and sign up for our professional newsletter.

A note about Sjögren’s Syndrome Awareness Month from the CEO of the Sjögren’s Syndrome Foundation:

April is Sjögren’s Syndrome Awareness Month and each year the Foundation chooses a theme and focus for our national awareness campaign. This year, our theme is Research – Our Hope for the Future.

The awareness campaign is simple: we are asking each member of the Foundation to consider mailing informational letters we provide you to six of your friends and/or family members. By doing this, you will be helping to increase knowledge about Sjögren’s syndrome, as well as helping the Foundation to make Sjögren’s syndrome a household name.

If you are already a member of the Foundation, then in April you will receive a Research – Our Hope for the Future kit in the mail. This kit will contain six letters for you to send to family and friends that will educate them on Sjögren’s syndrome, and focus on Sjögren’s syndrome research. It will also ask the recipient to consider making a gift to the Sjögren’s Syndrome Foundation. But remember, whether or not they give a gift, the most important part is that we are educating people on Sjögren’s syndrome.

What is unique about this year’s awareness campaign is that it is focusing on research and the need for more funding. With this in mind, and as a way to recognize your efforts in helping us, we are awarding one of you a 2009 Student Research Fellowship named in your honor! (i.e. “The Mary Smith 2009 Student Fellowship”)

All you have to do is mail all six letters and then send us the Summary Report letting us know that you helped to increase awareness, and you will have a chance at winning a grant named in your honor. Detailed information and instructions for entry will be included in the awareness kit you will receive in early April.

If you have any questions about our campaign please do not hesitate to contact the Foundation office at 800- 475-6473. All members of the SSF should receive their kit in the mail. If you have not received your kit by the beginning of April, or if you are not a member but would like to help raise awareness, contact the Foundation office.

Good luck and remember that it is critical all of us help spread the word about Sjögren’s syndrome. Together, we will make Sjögren’s a household name!

Sincerely,

Steven Taylore's signature
Steven Taylor
Chief Executive Officer

The largest registry ever established for Sjögren’s syndrome needs you!

The International Sjögren’s Syndrome Registry is looking for more individuals with Sjögren’s syndrome or with dry eyes and/or dry mouth of unknown cause. The Registry is designed to promote cutting-edge research into Sjögren’s syndrome by collecting data and biospecimens that will be made available to researchers in Sjögren’s syndrome. The lack of data and biospecimens remains the greatest stumbling block for moving discoveries ahead in the field of Sjögren’s.

This project marks the greatest amount of funding ever devoted to a Sjögren’s syndrome research initiative and promises to have far-reaching results. The registry is funded by the National Institutes of Health (NIH), with the National Institute of Dental and Craniofacial Research (NIDCR) as the lead institute and joined by the National Eye Institute (NEI) and the NIH Office of Research on Women’s Health.

The United States arm of the Registry is located in San Francisco, California, and has had participants from 30 of the 50 United States, Mexico, France and India. Patients will get top quality assessment and care. Payment will be available starting August 2007 to partially offset transportation expenses. Please contact the Registry at the University of California San Francisco by calling Danielle at (415) 476-0535 or e-mailing sicca@dentistry.ucsf.edu. Visit http://sicca.ucsf.edu/ for more information.

Explore the all-new Sjögren’s Syndrome Foundation website.

Coinciding with Sjögren’s Syndrome Awareness Month, the SSF has launched a completely redesigned and all-new sjogrens.org! Packed with all of the latest educational information for both patients and healthcare providers, sjogrens.org is your credible Sjögren’s syndrome resource.

The SSF's website was originally launched in 2003 and was a huge step forward for the Foundation. But in the six years since the SSF first gained an online presence, a lot about the Internet has changed. So the SSF partnered with outside web design firm to survey the Sjögren’s community to find out exactly what our visitors wanted to see in a new site.

What you seel today is the end result. Explore all of the different sections of the site and you will learn so much about both Sjögren’s syndrome as well as the Foundation.

And continue to check back for more updates. In the near future we are excited to launch an all new online store, as well as our Member Community where members of the SSF can communicate with each other online. All of this and more will be arriving to sjogrens.org in the next few weeks!