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eLetter #854 | February 28, 2020  

 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

 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 that includes Frequently Asked Questions. 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

 Rare Disease Day 2020 6000 Diseases

 

Rare is Proud Everywhere

February 29 is Rare Disease Day.  Scleroderma is considered a rare disease.  

  • 300 million people live with a rare disease worldwide
  • Over 6,000 different rare diseases
  • 72% of rare diseases are genetic
  • 70% of those genetic rare diseases start in childhood

RARE DISEASE DAY

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myPHteam

“My anxiety goes high at night. I don't know if I'm afraid I'm going to stop breathing or what."
-member of myPHteam

Join myPHteam sharing about this topic

myPHteam

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United Therapeutics PAH Today
 

March Taylor 3

 

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 in Bellevue, Washington, July 17-19, 2020.

SCHOLARSHIP

 Lia Young Experts by Experience

 

Experts by Experience

Patient Stories That Teach

"As a nurse, I could read my vital signs on the monitor and I knew that scleroderma might just take me out."  Lia Young, diagnosed 2014

Read Lia's story and those of others confronted by life-changing illnesses in Experts by Experience—Patient Stories That Teach, a collaboration of Mayo Clinic and Inspire.  

READ

Stepping Out Logo 2018 Be Part of the Cure

 

Be Part of the Cure!

You can become part of the cure by raising money at 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

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.

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2015 ATS PAR image

 

Be a Champion for Your Lung Health

The American Thoracic Society Public Advisory Roundtable (PAR) is pleased to invite you to its 14th annual FREE patient and family forum.

Meet the Experts
Saturday, May 16, 2020; 10 a.m. to 2 p.m.
Philadelphia Marriott Downtown Hotel
Meeting Room (Franklin Hall, 4th fl.)
1201 Market Street, Philadelphia, Pennsylvania

Featured Experts:
Joshua Diamond, M.D., M.S.C.E.
Kathleen Lindell, Ph.D., R.N.
Maryl Kreider, M.D., M.S.C.E.
Juan Wisnivesky, M.D., Dr.P.H.
Maria Crespo, M.D.

Complimentary parking and lunch will be provided. There will be an oxygen refill station for those attendees with portable oxygen needs. Please register using the event online RSVP form at: www.thoracic.org/patients/par/meet-the-expert-rsvp-form.php.

Seats are limited so please register by Fri, May 8, 2020. If you need more information, please contact Mr. Courtney L. White at cwhite@thoracic.org.

Clinical Trial Update

ICYMI: Privigen Granted Orphan Drug Designation For Treatment of Systemic Scleroderma

CSL Behring logoIn a February 11, 2020, press release, CSL Behring, a biotherapeutics company, announced that it has received orphan drug status from the U.S. Food and Drug Administration for Privigen (Immune Globulin Intravenous (Human),10% Liquid) as an investigational therapy in the treatment of systemic sclerosis (SSc). Fast Track status has also been granted.

CSL BEHRING PRESS RELEASE

Clinical Trial Opportunities

On October 14, 2019 Eicos Sciences opened enrollment for the AURORA study, a phase 3 clinical trial evaluating the safety and efficacy of intravenous iloprost in patients with systemic sclerosis (SSC; scleroderma) experiencing symptomatic Raynaud’s phenomenon (RP) attacks.

Iloprost, the investigational study drug being tested in the AURORA study, is designed to improve blood flow and reduce inflammation and scarring in the vessels from scleroderma. Iloprost is FDA approved as an inhaled therapy by the FDA for pulmonary arterial hypertension (PAH). It has also been used as an intravenous (IV) therapy for severe, disabling RP outside the United States.

You may qualify to participate in the AURORA study if you are at least 18 years old, have a diagnosis of scleroderma and are experiencing frequent symptomatic (pain, numbness, tingling, and/or discomfort) RP attacks. The study is being conducted at approximately 30 sites in the US and will be enrolling patients in the study until April 2020.

For more information click here: THE AURORA STUDY

 

 
 
 
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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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