The Sjogren’s Foundation

U.S. National Organization for Sjogren’s Disease

The Sjogren’s Foundation is the National Organization dedicated to supporting patients living with Sjogren’s. The Sjogren’s Foundation is respected throughout the world as being a leading voice for Sjogren’s Patients and Doctors. They are also invited to lend their knowledge to research organizations. global consortiums, and companies looking to understand the disease and provide support or therapeutics for Sjogren’s patients.

About The Sjogren’s Foundation

Everything the Foundation does is with the patient in mind first! In addition, to supporting patients, they spearhead the relationship development with the medical community such as creating Clinical Practice Guidelines for doctors. They lobby on the Hill with other health organizations so the patient’s voice is heard in government. They give research grants to promising research focused on Sjogren’s. And they raise funds to make this all happen. Why does the Foundation take so much on their shoulders? Because Sjogren’s Disease has been a very misunderstood and under-diagnosed disease.

If you have Sjogren’s and are not a member of this organization (at a cost of $36 per year) you should be! It is well worth the money for the education and support you receive. The Sjogren’s Foundation is also well-recognized internationally as a leader in the Sjogren’s Disease knowledge and research space. And you can also become a non-US resident member at $48 per year.

 

Sjogrens Foundation Logo
Sjognreslife Meditation

Steven Taylor, CEO, presenting at the National Health Conference. The NHC is the organization that supports all healthcare organizations such as the American Cancer Society, Arthritis Foundation, Heart Associiatioin, more.

Sjogren’s Foundation Recommendations

When you read anything from the Sjogren’s Foundation, you can bet that it is backed by data, accurate and methodical research, and scientific rigor. This is why the organization is so well-respected. As far as products go, think of the Foundation like Switzerland; they are fair to everyone who is doing the work to provide products to us. What you won’t see is opinion or judgment about any service or product (unless it is to protect us from harm). It is your job to assess if products work for you

At SjogrensLife, I’m trying to highlight popular products based on many conversations with patients over the years combined with my personal experience. This means that these products work well for many people, but not all, as we are so individual. But I believe starting with the most popular products may be your fastest route to comfort and may help you save money in trial and error.

Additionally, the Foundation has wonderful Support Groups and will soon be adding virtual support groups. If you are at my site, then you are seeking support, and the Foundation is a fantastic place to gather more information and share ideas with other patients. Learn more about Sjogren’s Foundation Support Groups. You can also view the Virtual Town Hall meetings the Foundation produced to help patients through the Covid-19 pandemic.

 

Steve Taylor, CEO 

The Sjogren’s Foundation CEO, Steven Taylor, is wicked smart and super productive. He runs one of the most impactful health organizations in the country with a fairly modest budget. Other health organizations look up to him and ask for his council. He has garnered the respect of so many people in the healthcare field and currently sits on the Board of Directors of the NHC.

Sjogren’s runs in his family (his Mom has Sjogren’s). And he drives every decision as if all Sjogren’s patients are his family. He works tirelessly for us!

I am tremendously proud to have served on the Board of Directors for the past seven years, with the last two years acting as Board Chair. And I am grateful that Steve has become a dear friend. Here we are at the NHC Leadership Conference sporting red noses handed out during an opening day speech.

 

SjogrensLife stacked rocks iini swilred sand

Posts About the Sjogren’s Foundation

Sjogrens Foundation 2020 Board of Directors Spring Meeting

Spring 2020 Sjogren’s Foundation Board Meeting Highlighting BIG Accomplishments

Smart Patients is sponsored by the Sjogren’s Foundation. It’s a place to connect with patients!

SjogrensLife _ Foundation Vision

Sjogren’s Foundation Vision and Mission

ACR Rheumatic Disease Report

Important: From the American College of Rheumatology.  How will you plan your care in the future?

Location

I live in the Seattle area and frequently travel when able!

Contact

You can email me at sjogrenslife@gmail.com.

Do know that I cannot give any medical advice as I am not a medical professional, but a patient just like you.

Thank you for visiting SjogrensLife!

xo Janet

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