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Scleroderma Foundation
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eLetter #809 | April 12, 2019  

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis

Often, persons with scleroderma do not know other people with the disease and may live in a state where there is no chapter of the Scleroderma Foundation or in a community where there are no support groups available. This web based self-management program was designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself. Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms, and strategies to advocate for yourself. Peer Mentors from the program will empower you to take control of your life and your healthcare.

www.selfmanagescleroderma.com

Dr. Dinesh Khanna.jpg


Results of Controlled Trial Evaluating Internet-Based Self-Management in Systemic Sclerosis

Read the results of a study conducted to compare an internet-based self-management program to a patient-focused educational book developed to assess measures of self-efficacy and other patient-reported outcomes in people who have systemic sclerosis (SSc). The study recruited patients from the University of Michigan and the Medical University of South Carolina, and was conducted by a large team led by Dinesh Khanna, M.D., M.Sc., and included input from Laura Dyas, Robert Riggs, and Kerri Connolly of the Scleroderma Foundation, and Janet. L. Poole, Ph.D., O.T.R./L., F.A.O.T.A.

read the full study

2019 National Conference Chicago Design 3


Take Advantage of the Early Bird Discount for National Conference
July 19-20-21, Chicago, Illinois

The early bird discount ends May 22.  There's plenty of time to sign up now, but don't wait.  Register today for the Scleroderma Foundation's National Patient Education Conference in Chicago. 

Watch a brief video about the conference.

Register today

FDA Public Meeting April 2019


FDA Public Meeting - Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities

The U.S. Food & Drug Administration (FDA) will host a public meeting on April 29 to obtain patients' and caregivers' perspectives on the impacts of rare diseases on daily life and to assess commonalities that might help the Agency and medical product developers further understand and advance the development of treatments for rare diseases. Patients and caregivers are strongly encouraged to participate either in-person or remotely.

  • Monday, April 29, 1 - 5 p.m. E.T. 
  • FDA's White Oak Campus, 10903 New Hampshire Avenue, Building 31 Conference Center, Room C, Silver Spring, Maryland 
  • Click here to register by April 15

If you are unable to attend in person, submit comments to the docket or join by webcast. To learn more, visit the meeting page or view the Federal Register notice.

Pulmonary Hypertension Brochure 2019


Pulmonary Hypertension in Scleroderma

An updated brochure (1/19) that provides information about pulmonary hypertension in scleroderma has been posted on the Scleroderma Foundation website.
scleroderma.org > patients & newly diagnosed > brochure downloads

Individuals with scleroderma are at increased risk for developing pulmonary hypertension (PH) from several mechanisms.  Frequently, people with scleroderma have multiple causes of their PH.  

The Scleroderma Foundation thanks Kristin Highland, M.D., Richard Silver, M.D., and David Badesch, M.D., for their assistance in the preparation of this brochure.

Read this and other detailed brochures about scleroderma symptoms at scleroderma.org/downloads.

Stepping Out Logo 2018 Be Part of the Cure - Web


Where are You Stepping Out?

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends of those who have scleroderma. The monies raised by individuals and teams are used to advance the Scleroderma Foundation's three-fold mission of support, education, and research.

April 27:  Houston, TX
April 28:  Worcester, MA
May 04:  Ventnor, NJ
May 18:  Columbia, MD & Westbrook, ME
May 19:  Sherman Oaks, CA

Find more walks at scleroderma.org/steppingout

Greg Cohen 2019 LA Marathon


Reach for the Cure

I ran because I am not defined by my illness and I will never stop moving forward,”
Greg Cohen, Dx 2017

Greg was diagnosed with limited systemic scleroderma in 2017 after experiencing three years of symptoms.  2019 was Greg's second run in the L.A. Marathon following his diagnosis.

The need is great. The time is now. The choice is yours. Please give generously: scleroderma.org/reachforthecure

 
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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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