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Scleroderma Foundation
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eLetter #657 | April 29, 2016  

Patients as Partners Program Garners Huge Support

sclero logoThank 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 >>

Conference Scholarship Program - Update

Save the Date, slider imageThe 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!  

Video: Do You Skin Care Products Do What You Need Them To Do?

welskincare.jpgIn 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 >>

The Widespread Problem of Low Health Literacy 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 >>


Clinical Trial Update

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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