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Scleroderma Foundation
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eLetter #856 | March 13, 2020  

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2020 National Conference and Kids Get Scleroderma, Too!

To protect the health of individuals with scleroderma, the Scleroderma Foundation has cancelled its 2020 National Patient Education Conference and Kids Get Scleroderma, Too! conference scheduled to take place July 17-19 in Bellevue, Washington.

Individuals with scleroderma, particularly those who have systemic sclerosis, are immuno-compromised and have a heightened risk for the worst-case symptoms of the coronavirus (COVID-19).

This decision was taken after thorough review of information available through public health agencies, primarily the Centers for Disease Control & Prevention and the State of Washington Public Health Department.

In lieu of the eagerly anticipated in-person educational conference and the unique and essential personal connections it provides; the Scleroderma Foundation is developing creative, alternative programming to be announced later.

A full refund of conference fees will be given automatically to all individuals already registered for the conference.

The conference will return to Bellevue in 2022.

The Foundation continues to the best resource for information about scleroderma. A wealth of information can be found on scleroderma.org.  Information requests can also be submitted by email, SFinfo@scleroderma.org, or by calling the Hope line, (800) 722-4673.

Video recordings of presentations by scleroderma experts at past Foundation conferences can be found at www.YouTube.com/sclerodermaUS. 

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Lung Involvement in Scleroderma

WEBINAR: Wednesday, March 25, 2 - 3 p.m. Eastern

As part of Scleroderma Week at the ATS and in conjunction with Public Advisory Roundtable (PAR) partner the Scleroderma Foundation, the American Thoracic Society will host a webinar on lung involvement in scleroderma, presented by Shervin Assassi, M.D. of the University of Texas Health Science Center at Houston.

WEBINAR

TOSS scleroderma self management

 

Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. "Taking Charge of Systemic Sclerosis” (TOSS) is a web-based self-management program designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms and to develop strategies to advocate for yourself. Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

 

More than Scleroderma Boehringer Ingelheim

More than Scleroderma Boehringer Ingelheim Jovana

 

More Than Scleroderma

A series of 12 scleroderma education programs are being offered in different locations around the country from February through April by one of the Scleroderma Foundation's partners, Boehringer Ingelheim.  These programs are free and open to individuals affected by scleroderma and their family and friends.  The Foundation is not managing registration and is not responsible for the content.  When you register for a "More than Scleroderma" program, you are providing your contact information to a third party, Boehringer Ingelheim.

To learn more and to register, call (855) 415-7492.

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Participant Center

 

Online Fundraising Works!

When you register online for Stepping Out to Cure Scleroderma, you immediately have access to robust online fundraising tools and a personal webpage to tell the story of your scleroderma connection.  Send and track emails through your "participant center" and watch your fundraising progress.  

Online donations tend to be larger than checks, and handling cash can be a problem.  With the Foundation's online fundraising tools, you can upload email addresses and write different messages for different groups of people in your network.  And, your fundarising history carries forward to next year, so you don't have to reinvent your list1

Be part of the cure!  Raise money online for Stepping Out to Cure Scleroderma.

STEPPING OUT

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Coronavirus Precautions

The Scleroderma Foundation takes seriously the threat the Coronavirus presents to individuals living with scleroderma. There is an increasing likelihood of a significant outbreak of the virus in the United States, and we wish to provide our community with reliable information from qualified sources. Below are two links to information that you may find helpful. The first is from the United States Centers for Disease Control (CDC) that includes Frequently Asked Questions (FAQ). The second link is from the American Thoracic Society that details information for those who have respiratory complications.

Please read this information carefully and contact your physician at the first signs of feeling ill.

Centers for Disease Control FAQ

American Thoracic Society Patient Resources

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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