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| eLetter #948 | December 17, 2021 |
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Be Powerful. Take Action.
You are more powerful than you might think. A simple email, phone call, or letter from you has the power to influence a United States Senator and other elected officials. Why? Because they represent you, and your opinion counts.
It's easy! Sign up for Action Alerts and from time to time the Scleroderma Foundation will send you an email and ask you to take action on an issue that affects people with scleroderma. One click gives you the power to send an email to your Senators or Representative. You tell your scleroderma story, we provide the policy detail. Remember, good governance depends on an informed citizenry.
TAKE ACTION
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Scleroderma Young Adults Needing Connection (SYNC)
ZOOM: December 17, 2021; 7 PM Eastern
Young adults between the ages of 18 and 42 who seek connection with others their age are invited to attend the SYNC Meet Up on December 17 for "All things holiday!" Wear your best ugly sweater and let's celebrate!
REGISTER
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The 20%: A Virtual Support Group for Males Living with Scleroderma
ZOOM: December 22, 2021; 7-8 PM Eastern
TOPIC: What is All the Fuss About?
To support the men with scleroderma in our community, the Michigan Chapter hosts a virtual support group just for men. Join the December 22 virtual group from 7 to 8 p.m. Eastern. The topic, What is all the fuss about?, offers reflections, tips, and tricks. There is time for questions at the end. Register now and find support and hope in the community.
REGISTER
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Dates & Deadlines for 2022 Health Insurance
You can still enroll in or change 2022 Marketplace health insurance right now on HealthCare.gov.
If you enroll or change a current plan by January 15, 2022, coverage will start February 1, 2022. After this date, you can only enroll or change plans if you qualify for a Special Enrollment Period.
HEALTHCARE.GOV
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Localized Scleroderma (Morphea)
VIDEO: Recorded July 2021
Watch this presentation regarding localized scleroderma, also called morphea, recorded during the 2021 virtual National Scleroderma Conference with Christina Lam, MD, and Michael York, MD. Drs. Lam and York provide an overview of the different forms of localized scleroderma in adults, and how localized scleroderma differs from systemic sclerosis. They also discuss the natural history of the disease and treatment options.
WATCH
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Common Complications and General Health Guidelines in Juvenile Systemic Sclerosis
VIDEO: Recorded October 2021
Watch this presentation from the 2021 virtual Kids Get Scleroderma, Too! conference with Kathryn Torok, MD, of the Children's Hospital of Pittsburgh. Dr. Torok discusses common complications in general health guidelines in juvenile systemic sclerosis.
WATCH
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Designated Scleroderma Research & Treatment Centers
Do I need to see a scleroderma specialist?
Yes. A rare disease requires the care of a specialist. Designated Scleroderma Research & Treatment Centers meet standards for care, research, and education set by the Scleroderma Foundation’s Medical & Scientific Advisory Board. Find a center near you at the link below.
CENTERS
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Pulmonary Arterial Hypertension in Pregnancy: What You Need To Know
Given the high rate of complications and mortality in pregnant people with pulmonary arterial hypertension, it’s recommended that people with PAH avoid becoming pregnant. Read more about PAH and pregnancy at myPhteam.
myPHteam
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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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