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| eLetter #657 | April 29, 2016 |
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Patients as Partners Program Garners Huge Support
 Thank you to all who responded to our request for patient
participation at the upcoming Patients as Partners meeting in Boston. The
response has been overwhelming and our patient panel is now full! Due to
the volume of phone calls and emails, individual replies are not possible right
now. However, all those who responded will have their names put on a master
list of patients interested in future panels.
Click here to read more about the Patients as Partners program >>
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Conference Scholarship Program - Update
 The
Scleroderma Foundation is grateful for everyone who applied to our 2016
scholarship program. Acceptance letters have been distributed for this
year’s National Patient Education Conference in New Orleans!
Due
to the generosity of many donors including Bill and Joi Goodbread of Missouri
creators of the Joseph Henty Memorial Scholarship Fund, we were able to fund all
qualified applicants this year!
Want
to know more about the Conference? Visit our conference website or you
many call our National Office at 800.722.4673.
Hope to see you in NOLA!
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Video: Do You Skin Care Products Do What You Need Them To Do?
 In this video Paula
Erwin-Toth, MSN, RN, CWOCN, FAAN
teaches the simple skin care regimen trusted by nurses and explains what you need to look for in your skin care
products to make sure you will not damage your skin. Clean and protect your
skin with products which have been specially designed for
fragile skin.
Click here to watch the entire video >>
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The Widespread Problem of Low Health Literacy
 According to a report from the U.S. Department of Health and Human Services, only 12 percent of adults in the United States have proficient health literacy. Health literacy involves being able to listen to and accurately follow a doctor's directions, make sense of medical jargon and insurance forms and other important medical information.
Click here for more >>
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Clinical Trial Update
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Fibrocell Receives Orphan Drug Designation from the U.S. Food and Drug Administration (FDA) for FCX-013 for the Treatment of Localized Scleroderma
Fibrocell Science, Inc.,
an autologous cell and gene therapy company focused on developing
transformational therapies for diseases affecting the skin, connective
tissue and joints, today announced that it has received orphan drug
designation from the U.S. Food and Drug Administration (FDA) for FCX-013
for the treatment of localized scleroderma, a chronic autoimmune
disease characterized by thickening of the skin and connective tissue
that can be debilitating and painful.
Click here for 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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