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:
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Research award recipients for 2012:
| Advocacy |
| 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 sjogrens.org you will find information on:
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| 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:
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