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eLetter #773 | August 3, 2018  
Conference 2018 DesignConf 2018 Philly Fri Group

20th National Patient Education Conference Sets Attendance Record

The Scleroderma Foundation's 20th National Patient Education Conference in Philadelphia, July 27-29, enjoyed record attendance with more than 650 attendees.  The continued growth in attendance illustrates the great need for accurate and timely information about scleroderma research and treatment, and coping strategies.  It also demonstrates the invaluable benefit that individuals and families affected by scleroderma receive from connecting with each other.  

Thank you to all who attended, to those who volunteered, and to those who presented.  The scleroderma community is stronger because of your commitment to the mission of support, education, and research.  

scleroderma.org/conference

Conf 2018 Philly Sun Reveal

Chicago Revealed as Site of 2019 National Patient Education Conference

The 2019 National Patient Education Conference will take place in Chicago, Illinois, July 19-21, at the Chicago Marriott Downtown Magnificent Mile.  Details about registration, accommodations, and scholarships will be announced at a future date.  

scleroderma.org/conference

Rx
 

United Therapeutics Announces FDA Approval of the Implantable System for Remodulin®

In a press release dated July 31, 2018, United Therapeutics Corporation announced approval by the U.S. Food and Drug Administration of a New Drug Application for the use of Remodulin (treprostinil) Injection in the Implantable System for Remodulin® (ISR).  

read more

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Research & Treatment Centers

Cleveland Clinic Florida

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a “center,” a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma. 
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In Southern Florida, go to Cleveland Clinic Florida, located in Weston, Florida.  

Betsy Craig 2018
 

Virtual Support Group

Thursday, August 9; 7 p.m. - 9 p.m. Mountain Time

The Rocky Mountain Chapter will host its quarterly virtual support group teleconference on Thursday, August 9 from 7-8 p.m. MDT. The topic is “Stem Cell Transplants – A Patient’s Perspective.”  Betsy Craig, who underwent a stem cell transplant earlier this year, will discuss the process. Time will be allowed for questions.

To participate, call (712) 775-7031 and enter the access code, 781-611-035#, when prompted.

webinar Michigan addressing myths 2018
 

One on One with Dr. Maureen Mayes: Addressing the Scleroderma Myths

WEBINAR: August 15, 2018; 7 p.m. - 9 p.m. Eastern

This webinar is perfect for individuals with scleroderma and their caregivers.  It will provide you with updated and accurate information about scleroderma and will help to dispel the many scleroderma myths that we all hear. 

register

Join Inspire!
 

"Grieving the Loss of Your Physician"

Inspire offers a series of columns, entitled "Experts by Experience," in collaboration with the Mayo Clinic. 

"Grieving the Loss of Your Physician" is written by Kari Ulrich, whi lives with multiple disorders.  Her article explores the close relationship she created with her primary care provider, and the sadness and gear she experienced with the physician could no longer be her doctor.  

Read the whole article and share your experience on Inspire.com

Stepping Out Logo 2018 Be Part of the Cure
 

Four States Host Five Stepping Out Walks During August

Ohio, Illinois, Wisconsin, and Indiana host Stepping Out to Cure Scleroderma walks and 5K runs during August. 

August 4 - Dayton, OH
August 5 - Geneva, IL
August 19 - Germantown, WI
August 25 - Highland, IN & Cleveland, OH     

sign up to walk today!

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Now Accepting Scleroderma Research Grant Applications

DEADLINE:  September 17, 2018

The Scleroderma Foundation's peer-reviewed grant program offers two distinct funding opportunities designed to foster the development of innovative and high quality research in fields related to scleroderma.  These are the New Investigator Grant and the Established Investigator Grant.  To apply or to learn more, follow the link below, or call 800-722-4673.  

research grant applications

 
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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

reata_horizontal_logo-2018-Bronze Natl


Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

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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