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eLetter #802 | February 22, 2019  

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Rare Disease Day 2019

Bridging Health and Social Care
Thursday, February 28

The U.S.A. joined Rare Disease Day® in 2009, making the campaign a truly international affair.  Rare Disease Day takes place on the last day of February each year to raise awareness among the general public and policymakers about rare diseases and their impact on patients’ lives.

To learn about events in the U.S., visit National Organization for Rare Diseases website.

learn more

Christina Loccke Claudette Johnson


The Land of Rare Disease

Claudette Johnson is 12 years old and she has scleroderma, which is a rare disease.  But, Claudette doesn't think she's so rare.   Watch this compelling video that she produced with help from her mother, Christina Loccke, and two others who also have a rare disease as an entry to the "Rare Is Not Rare" challenge sponsored by the National Center for Advancing Translational Sciences at the National Institutes of Health (NCATS/NIH).

Claudette's video won second place, and she will receive an award from NIH at a ceremony in Washington, D.C., on Rare Disease Day, February 28.

watch all the contest videos

2019 National Conference Chicago Design


Register Today for the National Patient Education Conference

July 19-20-21, Chicago, Illinois

Online registration for the 2019 National Patient Education Conference is live. The early bird discount is available until May 22, after which regular rates apply.  

Hotel information is shared upon conference registration.

If you are applying for a scholarship, please do not also register for the conference online.  

Register today.

Sign up for conference e-Alerts.

2019 National Conference Chicago SF logo


Conference Scholarship Applications

National Patient Education Conference
July 19-20-21, Chicago, Illinois

Scholarship applications are now being accepted to attend the 2019 National Patient Education Conference. The deadline to apply is March 20, 2019.

Scholarships are for first-time attendees who have scleroderma, including adults and children, and a parent/caregiver of minor children who have scleroderma.  Download an application today.

Visit scleroderma.org/conference for details.

Sign up for conference e-Alerts.

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$1.2 Million Grant to Research Raynaud Phenomenon 

The U.S. Department of Defense has awarded $1.2 million to a collaborative group to research Raynaud Phenomenon.  The Department of Defense has included scleroderma in its Congressionally Directed Medical Research Program (CDMRP) for a number of years.  However, to maintain this status, Scleroderma Advocates must contact their U.S. Senator and Representative every year and encourage them to vote to include scleroderma in the CDMRP.

read more

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Systemic Scleroderma Treatments:  Where Are We Now?

Read an article in the Michigan Health Lab online publication that reports on a new and novel outcome measure that is being used to determine effectiveness of new scleroderma treatments.

learn more

Stress Graphic


Stress Management Group

Webinar Series, Thursdays in February
2/28; 7-8 p.m. Mountain Time

The Rocky Mountain Chapter is hosting a stress management skills training webinar series. Participants learn to manage stress using cognitive-behavioral strategies, relaxation, and effective coping strategies.  The webinars are co-facilitated by Alaina Carr, M.A., and Sydneyjane Roberts, M.A., both doctoral students in the University of Colorado Denver Clinical Psychology Program, under the supervision of Kristin Kilbourn, Ph.D., M.P.H.

You may join the remaining session by computer, https://join.me/coscleroderma (enter your name and request to join) or by phone at (302) 202-5900 (enter conference ID 947-770-935).

Sexuality Brochure


Sexuality and Scleroderma

An updated pamphlet (January 2019) that discusses Sexuality and Scleroderma has been posted on the Scleroderma Foundation website.

The purpose of the pamphlet is to provide information and suggestions that will help people who have been diagnosed with scleroderma to continue to enjoy an active, fulfilling sexual life.

The Scleroderma Foundation thanks Elaine Furst, R.N., B.S.N., M.A., of Los Angeles, California, and JoAnna Harper, Pharm.D., R.Ph., of Minnesota, for their assistance in preparation of this information.

brochure download

Terry Perkins Chesapeake Virginia


Reach for the Cure

“Scleroderma forced me into early retirement and disability…I loved my job as an investment manager for a utility.”

“You have two choices; you can dwell on it or do something about it. And I chose the second.”

Terry Perkins, Dx 2003
Chesapeake, Virginia

www.scleroderma.org/reachforthecure

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Call for Nominations

The Scleroderma Foundation seeks to expand its National Board membership among those who are actively involved at the chapter level and have expertise in: fundraising/development, social media/technology, accounting/finance, human resources, nonprofit boards, and general business. Retired and non-practicing health care professionals will also be considered. The deadline is March 22, 2019.

To suggest a candidate for consideration, please complete the online form: www.scleroderma.org/boardcandidates

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

Contact webmaster@scleroderma.org,
or call (800) 722-4673.

 

 
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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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