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eLetter #629 | October 23, 2015 |
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Stepping Out to Cure Scleroderma: Let Us Know Your Thoughts
We'd like to thank the thousands of participants who took part this year in our "Stepping Out to Cure Scleroderma" walk or run events. We appreciate your continued support of these special events held across the country.
We would like your feedback to help us improve next
year's online experience for our participants. The survey will take approximately 15 to
20 minutes to complete. The deadline to complete the survey is 11:59 p.m. Central Time Saturday, Oct. 31, 2015. To access the survey, click the link provided in this email or visit national.scleroderma.org/walksurvey today.
To show our appreciation, you can receive a
special gift from the Foundation for providing your input. Please provide us your contact
information in the fields at the end of the survey. Your gift will arrive in 4 to 6
weeks to the mailing address that you provide.
If you have any further questions, please contact Tracey O. Sperry, National Director of Research and Development, at tsperry@scleroderma.org or (800) 722-4673, Ext. 248.
Take the survey now >>
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Video: What Your Dentist Wants to Know About Scleroderma
About half of the dentists responding to a survey feared that lack of
knowledge might result in harm if they treated scleroderma patients.
This concern reduces access to oral health care for scleroderma
patients. Dr. David Leader will explain what dentists should and would
like to know about scleroderma, oral health, and you. This session was
recorded at the 2015 National Patient Education Conference put on by the
Scleroderma Foundation.
View the entire video now >>
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New Evidence for PAH Therapy Using Two Popular Medications
Recent studies have indicated a confirmed benefit for pulmonary arterial hypertension (PAH) for patients using two popular medications, Letairis (ambrisentan) and Cialis (tadalafil).
Severe risk factors, such as death, hospitalization and worsening disease progression, were reduced by half in one clinical trial group. Findings from the study were presented earlier this year at the American Thoracic Society's annual meeting.
Read the full story at MedPage Today >>
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New Oxygen Therapy Guide from Pulmonary Hypertension Association
Our friends at the Pulmonary Hypertension Association have recently released a new online guide for oxygen therapy. Find out more about oxygen therapy, resources, and if your insurance coverage will help.
Read the full resource guide from PHA here >>
Visit PHA's full website here to learn more about their programs and resources >>
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"Scleroderma Voice" - Submit Your Story Ideas
Our next issue of "Scleroderma Voice," our quarterly member magazine will be due out in early 2016. Please submit your feedback or story ideas to us. We'd love to hear from you!
The deadline to submit your story ideas and comments is Tuesday, Dec. 1, 2015. Please email to mystory@scleroderma.org with "Scleroderma Voice Ideas" in the subject line.
Learn more about our award-winning magazine here >>
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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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