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.
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- EIN 11-2779073
- info@sjogrens.org
- (301) 530-4420
- 10701 Parkridge Blvd Ste 170 Reston VA 20191 USA
- http://www.sjogrens.org
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Nonprofit Overview
Causes: Diseases of Specific Organs, Health
Mission: The Foundation's mission is to: * Support Sjögren’s patients and their loved ones through education, resources and services * Provide credible resources and education for healthcare professionals * Serve as the voice for all Sjögren’s patients through advocacy and awareness initiatives * Lead, encourage and fund innovative research projects to better understand, diagnose and treat Sjögren’s
Results: Among other things, we: * Advocated & succeeded at changing the ICD-10 codes for Sjogren's. * Developed a standardized language for Sjogren's * Continued COVID-19 pandemic response * Educate patients about their disease via our website, newsletter, Foundation conferences, and our YouTube channel * Provide support to Sjogren's patients with our support groups & networks * Offered our 1st Childhood Sjogren's Conference in 2021 * Are funding a new Childhood Sjogren's Registry which will be housed at the Mayo Clinic * Provide Clinical Practice Guidelines to healthcare professionals on: Systemic Manifestations, Oral Management, Ocular Management, and Pulmonary Manifestations. We are working on one for the peripheral nervous system. Learn about the other wonderful things the Foundation has accomplished on our website.
Geographic areas served: the United States
Programs: "To create a community where patients, healthcare professionals and researchers come together to conquer the complexities of Sjögren's."