National Scleroderma Foundation

Scleroderma Foundation

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eLetter #801 | February 15, 2019

		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 June 24, 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.
		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.
		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 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).
		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: national.scleroderma.org/boardcandidates
		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
		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.
		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
		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.