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Scleroderma Foundation
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eLetter #758 | April 13, 2018  
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Are You Going to Philly?

The National Patient Education Conference is a remarkable experience where people with scleroderma can connect with each other and learn from one another and from scleroderma experts.  

REGISTER ONLINE for the 2018 National Patient Education Conference, July 27-29, in Philadelphia:  scleroderma.org/conference.

If you prefer to mail your registration, download a PDF registration form and send in a hard copy

Hotel information is also online.  To receive the group room rate of $169, call Loews Philadelphia Hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or click here to book your room via Loews' online system.

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Funding Conference Scholarships

The learning and emotional support that occurs at the National Patient Education Conference is a remarkable experience for those who attend.  The cost to attend, which includes the attendance fee and travel expenses, can be too great for many, who would benefit greatly from attending.  Those whose scleroderma is recently diagnosed are often the ones who stand to gain the most from being at Conference and meeting and interacting with others who have scleroderma.  Perhaps even more important than the knowledge aquired from the medical experts, it's seeing others living successfully with scleroderma that helps those who are newly diagnosed believe they can lead full lives.  

So how do we help folks attend Conference if they can't get there on their own?  That's where you come in.  A generous donation to the Conference Scholarship Fund makes it possible for some 50 people to attend for the first time every year, who would otherwise not be able to go. 

Please give generously to the conference scholarship fund

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To Donate or To Pledge...

Donating and pledging, what's the difference?  It's the button you click!

A donation is giving directly to the Scleroderma Foundation. That's what happens when you click the DONATE button on the Foundation's website.  

A pledge is a gift in support of someone who is walking or running in a Stepping Out to Cure Scleroderma walk or 5K run. Click on the link they sent to you via email, or visit www.scleroderma.org/steppingout and click on 'donate' to search for the participant's name.  

Both gifts provide needed funds to the Scleroderma Foundation for education, support, and research.   

Stepping Out to Cure Scleroderma

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Support Groups of Illinois, Wisconsin, and Indiana

Support groups enable individuals with scleroderma to connect and exchange information with others who face similar problems.  Groups also host expert speakers from time to time.  There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented.  Each week, we highlight support groups associated with a particular chapter.  The Greater Chicago Chapter hosts nine groups, including a telephone/email support group.

Support groups in Ill., Wis., and Ind.

CLINICAL TRIAL UPDATE
 Cumberland Pharmaceutical Heart

Research Participation Opportunity

Cumberland Pharmaceuticals is conducting a research study to determine whether a drug product called ifetroban will prevent cardiomyopathy in patients with diffuse scleroderma or pulmonary arterial hypertension associated with scleroderma. Eligible subjects will be reimbursed for their time and travel.

 

For more information, please call (615) 627-4121 or email bkaelin@cumberlandpharma.com.

 
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Diamond
National Sponsor
Actelion JSN 2018


 

Platinum Conference Sponsor

Boehringer Ingelheim


Corporate Sponsors
Genentech


 
 

 

   

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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