Monday, November 12, 2012

Your Sjogren's Syndrome Foundation Donations

I've had a few excellent questions recently regarding the Sjogren's Syndrome Foundation; specifically in respect to how they use their donation dollars.

You can read all about it on their website here, but overall the SSF focuses on three major issues: Research, Patient Advocacy, and Patient and Professional Education.

This from their site: (I did not copy all the links included in the following excerpts. Go to the Sjogren's Syndrome Foundation if you wish to click through to their additional information.)
Research Program
Research Programs

For 20 years, the Sjögren's Syndrome Foundation has been the premiere organization in Sjögren's syndrome research funding.

Our goal is to catalyze and support research efforts and new ideas for investigation until a cure for this devastating autoimmune disease is found.
The SSF is proud of the innovative work it funds. The Foundation's research program is designed to provide funds for the first-stage of promising research ideas that can then continue to develop with larger institution grants, such as NIH.
The SSF offers:
All grants, fellowships, and awards are determined by a review committee made up of medical and scientific experts in Sjögren’s and appointed by the SSF Medical and Scientific Advisory Board.
Research award recipients for 2012:

Get Connected

The Sjögren's Syndrome Foundation places a high priority on advocacy that will improve the lives of those with Sjögren’s syndrome.

Working with Legislators on Issues of Importance to Sjögren’s patients
We talk to leaders on Capitol Hill about a broad range of patient issues, including increased federal funding for research, coverage of expensive over-the-counter drugs and products used by Sjögren’s patients, access to specialists and treatment under managed care, better coverage from health insurance companies, and protection of patients' rights.
Increasing Federal Support for Sjögren’s Syndrome
A major focus is on increasing awareness and research into Sjögren’s syndrome. The Foundation works closely with agencies that are part of the U.S. Department of Health and Human Services (DHHS) to encourage increased support of research into Sjögren’s. DHHS is the largest grant-making agency in the federal government and includes the National Institutes of Health (NIH) which funds the majority of medical and scientific research in the U.S.

The Foundation serves on several NIH committees whose mission includes research into Sjögren’s and has received NIH support for important SSF scientific conferences on Sjögren’s. In addition, the Foundation interacts with the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Agency for Healthcare Research and Quality (AHRQ) and the Center for Medicare and Medicaid Services (CMS).

Ensuring Better Federal Regulatory Management of Sjögren’s syndrome 
We also educate federal regulators and legislators about the specific needs of Sjögren’s syndrome patients. We speak with regulators at agencies such as the Social Security Administration to improve disability coverage for those with Sjögren’s and the Food and Drug Administration to find ways to increase the availability of new drugs to treat this disease.

Partnering with Others to Further our GoalsTo ensure success on initiatives important to Sjögren’s patients, the Foundation also frequently partners and takes on leadership roles with others, such as The National Health Council and the National Coalition for Autoimmune Patient Groups.

Patient Information
About Sjögren's Syndrome

As a Sjögren’s patient, you face the challenge every day of coping with this debilitating disease. Though there are an estimated four million Americans living with Sjögren’s, you often feel alone and are unable to find credible information.

That is why, twenty-seven years ago, the Sjögren’s Syndrome Foundation began its crusade to serve as a resource for Sjögren’s patients. Whether you are newly diagnosed or have been suffering with Sjögren’s for years, we hope that you will use this website as an excellent source of information.
Inside you will find information on:

Healthcare Providers Information
About Sjögren's Syndrome

Attention healthcare providers: the Sjögren’s Syndrome Foundation is committed to providing  you with the information and tools you need to help you diagnose Sjögren's and manage its complications for your patients.

We do so by offering the very best materials to help you treat your patients, including:
The Sjögren’s Quarterly – This medical and scientific newsletter is distributed free-of-charge to thousands of healthcare providers in rheumatology, ophthalmology, optometry, dentistry, and research. Don’t miss out on this opportunity to keep on top of the latest news in Sjögren’s research and treatment best practices written and edited by the foremost experts in Sjögren’s.   
Educational Brochures – Brochures and fact sheets are offered free of charge to healthcare providers and their offices. The Foundation knows that your patients have a lot of questions. That is why we created easy to comprehend educational brochures and fact sheets to help them understand their condition.
>> View our educational brochures and fact sheets and order them for your office.
Professional Education Opportunities – the SSF offers educational opportunities for healthcare providers and their staff to attend our Patient Seminars and National Patient Conferences free of charge. View information on our upcoming seminars and contact the Foundation office to learn more.
>> See our calendar of upcoming patient conferences.
Scientific Initiatives
The SSF supports major scientific initiatives taking place in the field of Sjögren’s.
>> Find out about the SSF’s latest scientific initiatives

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