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Scleroderma Foundation
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eLetter #721 | July 28, 2017  
Save the Date: 2018 National Patient Education Conference Celebrating the Foundation's 20th

Thank you to the 630 patients, caregivers, health care providers, chapter and support group leaders, volunteers and others who attended the National Patient Education Conference last week in Arizona. It was a phenomenal weekend full of valuable information, new (and old) connections, and inspiring discussions.

We are pleased to announce that the 2018 Scleroderma Foundation's National Patient Education Conference will be held July 27-29 in Philadelphia at the Loews Philadelphia Hotel! Help us celebrate the foundation's 20th anniversary and make this the biggest and best conference yet. Will you join us?

2018 National Conference Save the Date

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2018 National Patient Education Conference

Obstructive Sleep Apnea in Adults

Sleep apneaObstructive sleep apnea (OSA) is a condition where you stop breathing for short periods of time according to the American Thoracic Society. These pauses in airflow can occur while you sleep, and can also wake you from a sound sleep. If you experience frequent apneas, other problems and serious health problems may develop.

OSA is a condition more common in men, women after menopause, and people older than 65. However, it also can occur in children. People at a higher risk of developing OSA include those with:

  • Enlarged tonsils or adenoids
  • A family history of OSA
  • Obesity
  • Jaw problems, such as micrognathia (small jaw) or retrognathia (pulled back jaw)
Read more
Other Conditions Related to Scleroderma

books and stethoscope.jpgWhen you're faced with a scleroderma diagnosis, your doctor may also diagnose you with other related conditions. This is known as a comorbidity, when two or more chronic diseases or conditions are present in a patient. Some comorbidities to scleroderma include Raynaud Phenomonen and Sjögren Syndrome. Find out more about these and other related conditions in the online resources available on the Scleroderma Foundation's website.

Read more

Taking Charge of Systemic Sclerosis: University of Michigan Survey

SurveyResearchers at the University of Michigan want to understand how people living with scleroderma would like to receive information about their healthcare.

Most educational materials are primarily available in English with a limited amount of resources available in Spanish. Internet barriers can also create hurdles for those who prefer to receive information via booklet or DVD. This survey is intended to address these barriers and to determine how to best share information.

Your participation is voluntary and anonymous. There is no compensation for completing the questionnaire.

Take the survey now

Download a letter from the University of Michigan (in English and Spanish)

Clinical Trial News

Contribute to Scleroderma Research from Home

HouseWould you like to contribute to scleroderma/systemic sclerosis research from the comfort of your home? If you have been diagnosed, researchers need your help! Donating is easy and fast, and you will receive $50 compensation for your time.

You may qualify to participate if you:

  • Are between the ages of 18 and 65
  • Have been diagnosed with scleroderma or systemic sclerosis
  • Do not have any additional autoimmune comorbidities

We can’t advance research without the help of people like you! If you have not done so already, please visit us here to sign up and see if you qualify to participate, or call (818) 804-2463 to speak with a research coordinator today.

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Thank you for sharing your inside story

A special thank you to those of you who shared your stories and were photographed at booth #19 during the National Patient Education Conference last weekend as part of the “More Than Systemic Sclerosis: The Inside Story” campaign. We appreciate your involvement and how you are helping us make a difference.

This campaign, sponsored by Boehringer Ingelheim in partnership with the Scleroderma Foundation, is encouraging those living with systemic sclerosis to positively redefine what life is like with this rare and devastating disease. Keep an eye out for more information on the campaign and the official launch in October!

BI Booth Conference

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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