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Scleroderma Foundation
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eLetter #839 | November 15, 2019  

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November is Open Enrollment for HealthCare.gov Coverage

Don't wait!  HealthCare.gov is open for enrollment now.  Log in, fill out an application, compare plans and premiums, and enroll.

Enter your zip code to determine whether your state has its own healthcare connector or HealthCare.gov.  

2020 PLANS & PRICES

YouTube 2019 Craig Unstoppable

Betsy Craig


Unstoppable
2019 National Conference Video

Betsy Craig, public speaker, author, and founder of MenuTrinfo, LLC, presented the closing keynote, "UNSTOPPABLE: When Strong Is All There Is," at the Scleroderma Foundation's 2019 National Conference in Chicago, Illinois. Her presentation was videotaped and is now posted on the Foundation's YouTube channel, along with 13 other recordings from the July conference.

WATCH VIDEO

2019 Conference Audience


Scleroderma Education Programs

Learn Local. Each chapter in the Scleroderma Foundation offers at least one scleroderma education program every year. There are two remaining in 2019.

  • Nov. 16, Penn Scleroderma Center
    Smilow Center for Translational Research, 1st floor Arthur Rubenstein Auditorium, 3400 Civic Center Blvd., Philadelphia, Pennsylvania

CALENDAR

2018 Capitol Hill Day Todd Gilligan 2


Tell Me Again, How Does This Advocacy Thing Work?

It's easy!  You write letters to your U.S. Senators and Representative.  We deliver the letters for you!

Go to scleroderma.org/advocacy to find the letters asking your U.S. Representative and Senators to co-sponsor H.R. 3446 and S. 2477.  Print, sign, scan, and email the letters. Done!

Email the signed letters to advocacy@scleroderma.org, or use U.S. Mail: Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA 01923.

The identical bills are titled National Commission on Scleroderma and Fibrotic Diseases Act of 2019. They are bipartisan and budget-neutral and are designed to improve coordination of research related to scleroderma and other fibrotic diseases that is already funded by the National Institutes of Health.

READ MORE

PH Awareness Month 2019 Pulmonary Embolism

CTEPH Fact

November is Pulmonary Hypertension Awareness Month

Between 0.5 and 5 percent of people who have experienced a blood clot in the lungs (pulmonary embolism) may develop chronic thromboembolic pulmonary hypertension (CTEPH). The reasons why someone develops chronic blood clots are not known.

READ MORE

Ticket to Work - WISE 2018


Ticket to Work and Employment Resources for Veterans
WEBINAR: Wed., Nov. 20, 3 - 4:30 p.m. Eastern

Ticket to Work resources can help veterans with disabilities prepare for successful post-service careers. Veterans who receive Social Security disability benefits should join ChooseWork for the next Work Incentive Seminar Events (WISE) webinar to learn more about resources and supports that can help veterans enter or re-enter the civilian workforce.

CHOOSEWORK

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10 Myths About Raynaud's Phenomenon
WEBINAR: Tue., Dec. 10, 1:30 - 2:30 p.m. Eastern

Get the facts for a warmer, more comfortable life. NeedyMeds' partner, the Raynaud's Association, will offer resources for support and education to help those living with Raynaud's to lead a fuller life.

REGISTER

Clinical Trial Opportunity

Cumberland Pharmaceuticals ifetroban trial

If you are an adult with systemic sclerosis, you may be eligible to take part in a research study sponsored by Cumberland Pharmaceuticals aimed at evaluating an oral study drug, called ifetroban, to determine if symptoms improve.

To learn more about ifetroban for systemic sclerosis (SSc), please call (615) 627-4121 or email bkaelin@cumberlandpharma.com.

Eligible subjects will be reimbursed for their time and travel.

 
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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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