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eLetter #797 | January 18, 2019  

MLK Jr


Holiday Observance

In observance of Marin Luther King Jr. Day, the Scleroderma Foundation National Office will be closed Monday, January 21, 2019.

During this time, calls to (800) 722-4673 will go to voice mail. 

scleroderma.org

Khanna Head Shot.jpg


VIDEO - Clinical Trials:  Why Are They Important and Why Should I Participate?

In this video, Dinesh Khanna, M.D., M.S.discusses the importance of participating in clinical trials and how to interpret them.  Specifically, you will learn different phases of clinical trials, what questions to ask when approached to do a clinical trial, and how clinical trials can help find an effective treatment for scleroderma.  This recording is from the Scleroderma Foundation's 2017 National Patient Education Conference.

watch video

2019 National Conference Chicago SF logo


Save the Date

National Patient Education Conference
July 19-20-21

Join us in Chicago, Illinois, for the 2019 National Patient Education Conference. 

Visit scleroderma.org/conference for details.

Sign up for conference e-Alerts to be notified when scholarship applications and registration are open.

Advocacy Advocate Legislator Visit


Help Talking to Elected Officials

Volunteers on the Scleroderma Foundation Advocacy Committee developed a series of webinars to help you interact with your state and federal legislators regarding public policy issues that affect you directly as a person who has scleroderma or a caregiver.

The webinars were recorded, and the videos are available on the Scleroderma Foundation website in the advocacy section.  You can find other helpful information there that can assist you in making your voice heard.

grassroots advocacy training

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Research & Treatment Centers

Northwell Health, Rheumatology

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.

There are two scleroderma research and treatment centers in New Jersey.  In New Brunswick, visit the Rutgers Health, Scleroderma Program, located in the Clinical Academic Building (CAB).

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Pulmonary Hypertension Overview

Many people living with scleroderma are also living with pulmonary hypertension.  PH is high blood pressure in the arteries that carry blood from the right side of the heart to the lungs.  It's considered a lung disease, while hypertension is considered a cardiovascular disease.

read more about the history and prevalence

Reach for the Cure Faces Square
 

Reach for the Cure

As deeply as we believe in the promise of medical science, no one who has scleroderma can afford to wait.

The need is great.  The time is now.  The choice is yours. Please give generously.

www.scleroderma.org/reachforthecure

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

Contact webmaster@scleroderma.org,
or call (800) 722-4673.

CLINICAL TRIAL PARTICIPATION

Scleroderma Lung Study IIIScleroderma Lung Study III

Combining the Anti-Fibrotic Effects of Pirfenidone (PFD) with Mycophenolate (MMF) for Treating Scleroderma-Related Interstitial Lung Disease

Scleroderma Lung Study III (SLS III) is focused on the treatment of pulmonary fibrosis and is being conducted at 17 different centers throughout the United States.  To participate, patients must meet the following criteria:

  • Be at least 18 years old. 
  • Have systemic scleroderma such as limited (previously called CREST syndrome) or diffuse scleroderma. 
  • Disease duration within seven years from first symptom (other than Raynaud’s phenomenon), such as puffy fingers or skin thickening. 
  • Have shortness of breath. 
  • Documented lung or pulmonary fibrosis. 
  • Not have other serious illnesses. 
  • Meet other eligibility criteria that your study doctor will explain to you as part of the evaluation process. 
read more:  ClinicalTrials.gov

 

 
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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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