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Scleroderma Foundation
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eLetter #695 | January 20, 2017  

Conference Scholarship Applications Now Being Accepted

2017 Conference Slider Save the DateFor first time attendees, the National Conference brings hope to those who thought they were alone in the fight against scleroderma. Thanks to the generous support of many donors and chapters, conference scholarships will be available to the 2017 National Patient Education Conference in Chandler, Arizona from July 21-23, 2017.

Apply now >>

Congress Debates Healthcare Changes

AdvocacyCongress is currently debating significant changes to the healthcare system, including modifications that will impact private insurance expenses and accessibility for scleroderma patients. This debate has the potential to create many negative outcomes for individuals and families affected by chronic or costly medical conditions like scleroderma. If federal patient protections are ultimately removed or weakened, then many patients could be exposed to increased costs, medical bankruptcy, and lack of access to needed care or therapies.

You can take action now! Contact your two U.S. Senators and your House Representative to ask them to support critical patient protections during the current healthcare reform effort.   

Research Survey Closing Soon

If you are a patient with systemic scleroderma(systemic sclerosis), you are being asked to participate in a research study on the role of environmental factors in scleroderma. Environmental factors are suspected to play a role in the development of scleroderma. This is a research project being conducted by the Medical University of South Carolina (MUSC). 

You can only participate in this survey if you are a patient with scleroderma. Your participation in this research study is voluntary.

The study involves filling an online survey that will take approximately 15 minutes. Your responses will be confidential. The survey questions will be about the type of your disease, your first symptom, the address(es) you live/lived at, and your occupation(s) when you developed your first symptom or prior to developing your first symptom. We will also collect identifying information such as your name, age, gender, race, date of birth, current mailing address, and e-mail address. We will review public records on air and soil quality for your address to determine if there may be common environmental factors associated with scleroderma.

We will keep your information confidential. To help protect your privacy, your survey answers will be coded and will be stored securely such that only the members of the research team will have access to your identifying information.

If you have any questions about the research study, please contact Dr. Carol Feghali-Bostwick or Dr. Celine Ward at (843) 972-8944 or at This research has been reviewed and approved by the MUSC Institutional Review Board for research involving human subjects.

We appreciate your participation in this survey. Please complete the survey once only. Click on the link below to begin. Once you begin the survey, you will need to complete it as the information will not be saved.

Take the survey >>

If you are unable to open the survey using the link, please copy and paste the URL into your browser:

New Support Group in Boise, Idaho

We are excited to announce that Southern Idaho now has a scleroderma support group. The group will provide ongoing support for patients diagnosed with scleroderma, their caregivers, and family and friends.

Group meetings will focus on some of the following areas: education, advocacy, patient and family resources, guest speakers, and pain management. With the support of the National Scleroderma Foundation, we will work to educate the community about this disease and the impact it has on those with whom it affects.

Meetings begin in February 2017. All meetings will be held at the Anderson Center at St. Luke’s Hospital, 100 E. Idaho St., Boise, ID 83712. This support group is open to patients and anyone who has been affected by scleroderma.

Please spread the word and we look forward to seeing you!

For more information, please email: SCLERODERMA.IDAHO@GMAIL.COM

JoAnna Harper, Pharm. D., R.Ph.
Dee Burlile, M.Ed
Sean S. Burlile, Ph.D.

Energy Assistance Programs

WinterDon't get stuck in the frigid cold without heat and electricity this winter.

There are programs to help individuals and families who qualify. Find out more information about the Low-Income Energy Assistance Program (LIHEAP) offered in all 50 states.

Learn more >>

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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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