Sjogrens Syndrome Foundation, Inc.
Rating: 5 stars 1 1 review 514
6707 Democracy Blvd Ste 325 Bethesda MD 20817 USA
The SSF mission is to educate patients and their families about Sjögren's syndrome, increase public and healthcare provider awareness, and encourage research to find better treatments and a cure.
Research grants to promote continued medical and scientific research in the area of sjogren's syndrome. Five grants were awarded to university affiliated researchers during fye 2015. Two student fellowships were also awarded for internships in a sjogren's research laboratory.
newsletter - the ssf produces two newsletters. "the moisture seekers" is a patient focused newsletter with information about sjogren's and its many manifestations. Tms is produced monthly. The "sjogren's quarterly" is a professional publication produced 4 times a year and offered free to all healthcare professionals to increase awareness and education around sjogren's.
awareness activities help to promote sjogren's syndrome and educate potential patients through media and public relations. These programs include speaking at professional conferences as well as distributing educational materials to the public and to professionals.
one national patient confernce was held this past year. This conference was held for patients and their families to learn from healthcare professionals about treatment and management of sjogrens syndrome. Over 400 individuals attended these conferences. In addition, the foundation performed other various services benefitting the industry at large. It also sells products and materials that are relevant to those with sjogren's syndrome.
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Reviews for Sjogrens Syndrome Foundation, Inc.
I was diagnosed with Sjogren's at 15 (over a decade ago). Since that time, I have interacted with quite a few foundations, as a patient, health activist, and even professionally in my role as an auditor (my clients include not-for-profit organizations). I even plan to start my own foundation. In these experiences I've found the SSF to be among the elite - those organizations with novel ideas, a deep interest in the patients they represent, and worthy of my trust. I know every dollar I donate to or raise for the foundation is spent with the interests of the patients in mind, usually in support of research. Because of the foundation's grants, researchers who would have spent their time and talents on more 'popular' diseases have been brought into the Sjogren's world, and made desperately needed headway. The foundation further commits to supporting excellence in research and advancements by partnering with the top professionals in the world for this disease.
I've personally experienced the results of this organization in...
Most of my experiences with the organization are in my ability to take an active and productive leadership role on various events and initiatives; as a patient, I also see some fruits of their research sponsorship in advancements in the current pipeline; I've benefited from information and resources available on their website.
If I had to make changes to this organization, I would...
Work to increase patient-to-patient connections and to promote the voices of patients among medical and research communities.
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