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Scleroderma Foundation
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eLetter #820 | June 28, 2019  

2019 World Scleroderma Day


World Scleroderma Day
Know the Face of Scleroderma

Saturday, June 29 is World Scleroderma Day, a day dedicated to raising awareness of scleroderma across the globe.  Help us let everyone know the face of scleroderma spread the word today.

Visit SclerodermaAware.org

NORD logo stacked


Self-Advocacy and Care Coordination
Webinar: July 24, 2019; 2 p.m. Eastern

Join us for an upcoming NORD (National Organizaiton for Rare Disorders) webinar on self-advocacy and care coordination.  Presenting will be Laran Hyder, Director of Education and Outreach at the Neuroendocrine Tumor Research Foundation (NETRF), and Jill Pollander, Director of Patient Services at NORD.

REGISTER TODAY

Virginia Steen M.D.

Virginia Steen, M.D.


Lung Involvement in Scleroderma
Virginia Steen, M.D., Systemic Sclerosis Lecture
National Patient Education Conference
July 19-21, 2019, Chicago

The annual Systemic Sclerosis Lecture at the National Patient Education Conference will be presented by Virginia Steen, M.D., will present the annual Systemic Sclerosis Lecture on lung involvement in scleroderma. The lungs are potentially affected in all patients with scleroderma. Patients need to know how they can be proactive in helping the doctors identify any lung involvement as early as possible. We now have more than 14 treatments for the once deadly complication of pulmonary hypertension and over the last 5 years, there have been lots of exciting advances in the treatment of pulmonary fibrosis. We will review these important complications of scleroderma and the newer treatments.

REGISTER TODAY

Conference 2018 Youth Parents


Kids Get Scleroderma, Too!
Kids, Teens, & Parents Program at National Conference

Kids Get Scleroderma, Too! (KGS2) is offered as part of the Scleroderma Foundation's National Patient Education Conference, which takes place July 19-20-21, 2019 in Chicago, Illinois. KGS2 is an exceptional program for children and teens, ages 5 to 17, who have scleroderma, and for their siblings, or for children whose parent has scleroderma, and for other young people whose lives are affected by the disease.

KGS2 teaches children and teens and their caregivers about scleroderma in a fun environment that promotes making new connections. The entire weekend is filled with engaging, fun workshops and activities specific to their needs.

REGISTER TODAY

Advocacy Advocate Legislator Visit


Call to Action on HR3446

On Monday, June 24, 2019, Representative Peter T. King (R-NY-2) introduced H.R. 3446, the National Commission on Scleroderma and Fibrotic Diseases Act. If passed into law, this bipartisan, budget-neutral bill would establish a commission to improve coordination of NIH-support research related to scleroderma and other fibrotic diseases.

Sign and return the advocacy letter asking your member of Congress to cosponsor our bill! All advocacy letters are hand-delivered to members’ office on Capitol Hill.  Make your voice heard!

DOWNLOAD THE LETTER TODAY

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis

Often, persons with scleroderma do not know other people with the disease and may live in a state where there is no chapter of the Scleroderma Foundation or in a community where there are no support groups available. This web based self-management program was 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 strategies to advocate for yourself. Peer Mentors from the program will empower you to take control of your life and your healthcare.

Visit selfmanagescleroderma.com

2019 Stepping Out Denver Woman More than Scleroderma


Where Are You Stepping Out This Weekend?

Better yet, WHY are you Stepping Out to Cure Scleroderma this weekend?

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends of those who have scleroderma. The monies raised by individuals and teams are used to advance the Scleroderma Foundation's three-fold mission of support, education, and research.

If online registration is closed, please sign up in person at the walk site.

June: Virtual Plymouth MA

June 29: Dallas TX, Hartford CT, Portland OR

July 27: Columbus OH

July 28: St. Paul MN

Find more walks at scleroderma.org/steppingout

 
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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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