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| eLetter #752 | March 2, 2018 |
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March 21 Deadline to Apply for a Scholarship to 2018 National Patient Education Conference
March 21 is the deadline for conference scholarship applications to arrive in the Foundation office. Scholarships are available for individuals with scleroderma.
national.scleroderma.org/scholarship
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2018 National Patient Education Conference - July 27-29, Philadelphia
REGISTER ONLINE for the 2018 National Patient Education Conference at scleroderma.org/conference.
If you prefer mail, download a registration form.
Hotel information is also online. To receive the group room rate of $169, call Loews Philadelphia Hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or click here to book your room via Loews' online system.
national.scleroderma.org/conference
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Support Groups: Colorado
Support groups enable individuals with scleroderma to meet and exchange information with others who face similar problems. Groups also host expert speakers on specific topics from time to time.
There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented. Each week, we highlight support groups associated with a particular chapter. The Rocky Mountain Chapter (Colorado) hosts four groups, plus a "virtual" group that meets via teleconference.
Support Groups in Colorado
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Scleroderma
& How it Affects Our Children
Webinar, March 14, 7-9 p.m. Eastern
Dustin Fleck, M.D., Pediatric Rheumatologist from Michigan Medicine will be leading this webinar for parents of juvenile scleroderma patients and providing educational information about the disease, medications and current treatments.
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Meeting with Elected Officials
Video of Grassroots Advocacy Webinar (2/26)
Watch this video to catch a glimpse of the Capitol Hill Day experience. Sit in on a mock meeting that's just like the ones scleroderma advocates have in the offices of Congress members.
Watch Video
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Join the Online Scleroderma Community at Inspire.com
Inspire is the leading healthcare social network with a mission to accelerate medical progress through a world of connected patients. The Scleroderma Foundation partners with Inspire to offer an online support community. There are nearly 40,000 members engaged in more than 2,700 discussions about living with scleroderma.
What would you like to talk about today?
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The Healthline & NORD
"Stronger Scholarship"
Healthline, a consumer health information website, and NORD, the National Organization for Rare Disorders, team up to offer four scholarships of $5,000 each to assist and empower college students who are making an impact on rare and/or chronic diseases through research, patient advocacy, raising awareness, or community building. Application period is March 1 - May 1, 2018.
Read about Elibigibility and How to Apply
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It's about Teams at Work
Forming a team for Stepping Out to Cure Scleroderma is a great way to build connections at your place of work. When you talk about your scleroderma connection, people take notice and they are motivated to help. Walking together is a feel good way to boost morale and to share a common experience. And a company T-shirt is a little extra promotion for the boss!
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| Clinical Trial Update |
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Research Participation Opportunity
Cumberland Pharmaceuticals is conducting a research study to determine whether a drug product called ifetroban will prevent cardiomyopathy in patients with diffuse scleroderma or pulmonary arterial hypertension associated with scleroderma. Eligible subjects will be reimbursed for their time and travel.
For more information, please call (615) 627-4121 or email bkaelin@cumberlandpharma.com.
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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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