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Scleroderma Foundation
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eLetter #677 | September 23, 2016  

Register Now for the Kids Get Scleroderma Too! Patient Education Forum

Juvenile Conference Attendees 2013Join the Scleroderma Foundation Tri-State Chapter on October 28-29th for an educational and social event for patients and family.  Scleroderma doesn't limit itself to adults, many children are also affected by this autoimmune disease. Events include a Halloween Costume Party and educational workshops for adults, young patients and siblings.  This fantastic event will be held at the Hackensack University Medical Center in Hackensack, New Jersey.

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The Pulmonary Hypertension Association (PHA) presents PHA on the Road

220_PHA-Conference_7-25-15.jpgBetween 8 and 12 percent of people with scleroderma could develop pulmonary hypertension. Looking to connect with more information from medical professionals and network with other patients and caregivers? Join PHA on the Road—a FREE all-day program taking place in Washington, D.C. on Oct. 1. In addition to free registration, breakfast, lunch, valet parking and daycare are complimentary. There will be a support group just for scleroderma patients living with PH.

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Video: Closing Keynote - Got Adversity?

eletter92116.jpgWe are happy to announce that select videos from the 2016 National Conference are now available online.  They can be found on our YouTube channel.  In our powerful closing keynote, scleroderma patient, Andrew Botieri recounts his sudden life altering ordeal and eventual triumph over scleroderma which almost took his life. He discusses the important of finding balance in our lives, reducing stress and the power of mind, body and spirit.  We will continue to post more videos as them become available.

Click here to watch >>

 

American Thoracic Society Home Oxygen Patient Survey

ats-logo.gifOver 1.5 million Americans use home oxygen, a life prolonging therapy that greatly improves the quality-of-life of adults living with chronic lung diseases. However, over the past few years pulmonary clinicians have noted a significant increase in problems that home oxygen users are reporting.  In addition, the Center for Medicare and Medicaid has implemented a competitive bidding program that has led to a drastic cutback in the availability of adequate portable oxygen delivery systems due to the now limited reimbursement of oxygen supply companies. The complexity and priority of this problem was first addressed at the 2015 American Thoracic Society (ATS) Nursing Assembly Planning Committee meeting when an Oxygen Interest Group was created. As nurses caring for patients across all lung diseases, the need to identify strategies to address these problems was deemed a priority and to that end an Oxygen Work Group convened at the May 2016 ATS meeting in San Francisco. One of the key goals identified during this unique multidisciplinary meeting was the need for data to document the precise problems experienced by patients using supplemental oxygen.  A 'Patient Supplemental Oxygen Survey"  survey was developed with critical input from clinician experts, patients, patient advocacy organizations oxygen suppliers and payers.  The survey is designed for adult lung disease patients who use oxygen at home.

Click here to participate >>

 
 
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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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