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eLetter #855 | March 6, 2020  

Jennifer Cropper Direct Mail 2019 II

 

March 18 Scholarship Deadline!

Scholarship applications must be received by March 18 in the Foundation's national office. Detailed instructions are included on the form, which is available on the National Conference website.

Use the same form for the National Patient Education Conference and the Kids Get Scleroderma, Too! conference.  Both take place July 17-19, 2020, in Bellevue, Washington.

SCHOLARSHIP

How Scleroderma Affects Your Family Michigan Webinar 2020

 

How Scleroderma Affects Your Family

Scleroderma often affects more than just the individual diagnosed. Whether you’re an individual with scleroderma, a parent, spouse, sibling or loved one, watch a webinar featuring Elaine Furst, B.S.N., M.A., produced by the Michigan Chapter to learn tips for support and management.

WATCH

NORD Patient and Family Forum 2020 Ohio

 

Sing Me A Story Children's Song Raffle

National Organization for Rare Disorders (NORD) is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity is supported by Horizon Therapeutics’ #RAREis program.

NORD will spotlight one child’s story at the Living Rare Forum welcome reception on Thursday, May 14 with a musician who will perform a song from this story during our welcome reception. This child will be randomly selected from eligible entries via a raffle.

ENTER RAFFLE

 2020 Conference Seattle Save the Date

 

Conference Registration is Open!

Join us on our journey "Climbing Toward a Cure" at the 2020 National Patient Education Conference, July 17-19 in Bellevue, Washington, on Seattle's Eastside. 

  • Learn from the world's leading scleroderma experts.
  • Connect with others who have scleroderma.
  • Talk to research scientists 

The early bird rate is $220 for Foundation members until May 20 when it increases to $270.  At least one person in the household must be a member to qualify for the discount, so renew or join today.  

REGISTER

 KGS2 Conference 2020 Seattle Space Needle

 

Kids Get Scleroderma, Too! Conference Registration is Open!

New for 2020, Kids Get Scleroderma, Too! is an independent conference with a separate registration process for youth, ages 5 to 17, who have scleroderma, and their parents, guardians, and siblings. The dates, location, and venue are the same, July 17-19 in Bellevue, Washington, on Seattle's Eastside. 

  • Learn from the world's leading juvenile scleroderma experts.
  • Connect with other families affected by scleroderma.

The early bird rate is $95 for youth and $220 for adult Foundation members until May 20 when it increases.  At least one person in the household must be a member to qualify for the discount, so renew or join today.  

REGISTER

Advertisement
United Therapeutics PAH Today
 

 Raynaud Hands

 

Management of Raynaud & Digital Ulcers

Raynaud Phenomenon is the most common early symptom of systemic scleroderma, and is present at one time or another in about 90 percent of individuals who have scleroderma.  Learn more about this condition, available treatments, and symptom management from a presentation recorded at the 2019 National Patient Education Conference by Philip Clements, M.D., M.P.H., University of California, Los Angeles.

VIDEO

More than Scleroderma Boehringer Ingelheim

More than Scleroderma Boehringer Ingelheim Jovana

 

More Than Scleroderma

A series of 12 scleroderma education programs are being offered in different locations around the country from February through April by one of the Scleroderma Foundation's partners, Boehringer Ingelheim.  These programs are free and open to individuals affected by scleroderma and their family and friends.  The Foundation is not managing registration and is not responsible for the content.  When you register for a "More than Scleroderma" program, you are providing your contact information to a third party, Boehringer Ingelheim.

To learn more and to register, call (855) 415-7492.

Stepping Out Logo 2018 Be Part of the Cure

 

Step Out!

Be part of the cure by raising money and walking (or running) in a Stepping Out to Cure Scleroderma walk or 5K run. Stepping Out is a rallying point for family, friends and coworkers to generate funding for the Foundation's mission: support, education, and research.

Several new dates have been added to the calendar!

STEPPING OUT

Rod of Asclepius Medical Symbol 

 

Coronavirus Precautions

The Scleroderma Foundation takes seriously the threat the Coronavirus presents to individuals living with scleroderma. There is an increasing likelihood of a significant outbreak of the virus in the United States, and we wish to provide our community with reliable information from qualified sources. Below are two links to information that you may find helpful. The first is from the United States Centers for Disease Control (CDC) that includes Frequently Asked Questions (FAQ). The second link is from the American Thoracic Society that details information for those who have respiratory complications.

Please read this information carefully and contact your physician at the first signs of feeling ill.

Centers for Disease Control FAQ

American Thoracic Society Patient Resources

Clinical Trial Opportunities

ClinicalTrials.gov

Clinical Trials mapYou can track clinical trials for scleroderma, systemic sclerosis (SSc), pulmonary hypertension, and more at ClinicalTrials.gov. This robust website is published and maintained by the National Institutes of Health, U.S. National Library of Medicine. Search options include trials that are recruiting, country, state, and more. States highlighted in red in the map (left) have the most scleroderma-related trials. This concentration in specific states is solely the result of the geographic location of the institutions that focus on scleroderma research.

You can also find information about scleroderma-related clinical trials on scleroderma.org/centers, where designated "Scleroderma Research and Treatment Centers" list the trials taking place in their institutions.

CLINICAL TRIALS

 

 
Kadmon Trial 2020 kadmonscleroderma.com
 
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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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