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Scleroderma Foundation
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eLetter #841 | November 29, 2019  

Giving Tuesday 2019 Brittany R sq


#GivingTuesday is December 3

Know the Face of Scleroderma
"I am most proud of graduating college in 2016...I haven't let scleroderma get me down," Brittany R.

Brittany R. was diagnosed with scleroderma in May 2012. At that time, her doctor gave her six months to live. She went on to complete a bachelors degree in Child and Adolescent Development because a scleroderma specialist had the tools to save her life.

On Giving Tuesday, visit the Foundation's Facebook page and give hope.

Advocacy 2018 Capitol Hill Day Hannah Diane Weber


"You Can't Always Get What You Want"

The Rolling Stones were right. Remember the rest of those famous lyrics? "But if you try sometimes, well, you just might find you get what you need!" The Scleroderma Foundation makes it easy to ask for what you need from your elected officials, we wrote a letter for you. Print it, sign it, scan it, and email it back to us. Then we hand deliver the letters for you!

Go to scleroderma.org/advocacy to find letters asking your U.S. Representative and Senators to co-sponsor H.R. 3446 and S. 2477, respectively.Email the signed letters to advocacy@scleroderma.org. Or, use the U.S. Mail: Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA  01923.

H.R. 3446 and S. 2477 are identical bills, 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

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Scleroderma Support Groups

Find volunteer led support groups near you at scleroderma.org/supportgroups.

While there are many support groups all over the country, there are areas without a group. If you are interested in volunteering to start a group, contact SFinfo@scleroderma.org. Training is available for support group leaders.

SUPPORT

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Open Enrollment Ends December 15

Don't wait! Open enrollment on HealthCare.gov ends December 15. Log in TODAY, 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 if you must use HealthCare.gov.

2020 PLANS & PRICES

PH Awareness Month 2019 Scleroderma

November is Pulmonary Hypertension Awareness Month

"Even though there is no cure, that no longer scares me," says Rochelle Horton, who has pulmonary hypertension associated with scleroderma.

PHaces of Hope

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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

ClinicalTrials.gov

Clinical Trials mapYou can track clinical trials for scleroderma, systemic sclerosis (SSc), pulmonary hypertension, and more at ClinicalTrials.gov. This robust website is published and maintained by the National Institutes of Health, U.S. National Library of Medicine. Search options include trials that are recruiting, country, state, and more. States highlighted in red in the map (left) have the most scleroderma-related trials. This concentration in specific states is solely the result of the geographic location of the institutions that focus on scleroderma research.

You can also find information about scleroderma-related clinical trials on scleroderma.org/centers, where designated "Scleroderma Research and Treatment Centers" list the trials taking place in their institutions.

CLINICAL TRIALS

 
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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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