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Greetings!
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CAN'T MAKE THE CONFERENCE?
Request Presentations from Workshops
Even if you can't join us for the 14th annual National Patient Education Conference in Dallas, we will record many of the most popular workshops and lectures from the event. These videos will be available to view online in the future. You also can contact the National Office after Monday, Aug. 6, to request presentation materials from more than 60 workshop sessions. Simply call (800) 722-4673.
We hope you will be able to join us in just two weeks when we take over the Gaylord Resort and Conference Center in Dallas for this amazing event.
HOTEL SELL-OUT!
We have just been notified that the Gaylord Texan Resort now is sold-out for the conference. You may call the hotel at (866) 782-7897 to be placed on a waiting list. Otherwise, here is list of alternatives near the venue.
Register for this year's conference. Look for more information about the conference below.
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New Research About Systemic Sclerosis in Children
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New research data from Europe indicates that juveniles and young adults with systemic sclerosis have similar organ involvement, when compared to adults with the disease.
Researchers examined information from the EUSTAR database. They compared data from patients who developed systemic sclerosis before 16 years old with patients who first experienced symptoms between the ages of 20 and 40 years old.
The study indicates that there is no significant difference between the two groups involving organ involvement. Raynaud Phenomonen affected the largest percentage, about 95 percent; followed by GI involvement, digital ulcers, joint contractures and pulmonary fibrosis.
Read more about this study that was published in the Journal of Rheumatology.
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Learn More About Workshop Sessions
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 We have updated our website to include details for each of the more than 60 workshops and panel discussions at the National Patient Education Conference.
Here's a sampling of workshops:
- Accessing Patient Assistance Programs
- Caregiving: Caring for Yourself while Caring for Another
- Disability Benefits: Know Your Rights
- Options for Treating Your Hands - When to Consider Surgery
- Scleroderma Tests and What They Mean
- Understanding the Psychological Effects of Scleroderma
- and many more!
This year's program also includes a detailed track specifically for juvenile scleroderma patients and their parents or caregivers, led by experts from Children's Hospital of Los Angeles, CoachArt, Texas Scottish Rite Hospital for Children and Children's Hospital of Pittsburgh.
Be sure you don't miss out on this amazing educational opportunity for people living with scleroderma, their family and friends. Join the more than 450 others who already registered to attend the conference in Dallas, REGISTER TODAY!
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Join a Scleroderma Discussion Group at the
National Patient Education Conference
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The Scleroderma Patient-centered Intervention Network, or SPIN, needs your help to develop a free, online program to help you manage your scleroderma.
We are looking for conference attendees living with scleroderma who can attend a 60-minute discussion group session during the conference in Dallas. Participants will be asked about their thoughts on an online self-management program, topics they want included, and factors that would make the program useful for them.
Discussion groups will be held at:
- 3:20 p.m. to 4:20 p.m. Saturday, July 28
- 12:30 p.m. to 1:30 p.m. Sunday, July 29
SPIN is a group of international investigators with experts from Canada, Europe and the U.S. from institutions such as Johns Hopkins University, University of California at Los Angeles, University of Michigan and University of Texas.
You MUST sign-up in advance to be a part of this discussion group. To sign-up or get more information, email Katherine Milette at katherine.milette@gmail.com, or stop by the SPIN booth in the exhibit hall for more information.
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Disclaimer: The Scleroderma Foundation in no way endorses any drugs or treatments reported in the eLetter. Information is provided to keep readers informed. Because the manifestations and severity of scleroderma vary among individuals, personal 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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