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eLetter #801 | February 15, 2019  

2019 National Conference Chicago Design 1


Registration Opens for National Patient Education Conference

July 19-20-21, Chicago, Illinois

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

Hotel information will be shared upon 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.

Sjogren Syndrome 2019


Sjögren Syndrome

An updated brochure (January 2019) that outlines Sjögren Syndrome (pronounced, show-gren) has been posted on the Scleroderma Foundation website. Sjögren Syndrome is an autoimmune rheumatic disease characterized by malfunction of the tear and saliva producing glands and the mucous-secreting glands of the vagina, along with other body organ involvement. This information was prepared by Thomas A. Medsger Jr., M.D., Professor of Medicine Emeritus, University of Pittsburgh, and Ghaith Noaiseh, M.D., Director, Sjogren’s Clinic, University of Pittsburgh for their help in preparing this brochure.

brochure download

Stress Graphic


Stress Management Group

Webinar Series, Thursdays in February
2/21, 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 two sessions 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).

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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

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Bridging Health and Social Care

Rare Disease Day 2019
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 find out about events in the U.S., visit the website for the National Organization for Rare Diseases.

learn more

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Research & Treatment Centers

Virginia Mason Medical Center

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma.
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In Washington State, there are two scleroderma research and treatment centers including the Virginia Mason Medical Center in Seattle.

livebetter with pulmonary rehab
 

Pulmonary Rehabilitation

Did you know that 42% of patients with a chronic pulmonary disorder chose not to leave their home for a social event because of their symptoms? Learn more about how pulmonary rehab can help you do the things you want to do again.

Learn more

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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