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| eLetter #764 | May 25, 2018 |
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Conference Workshop Preview
TAmong the informative workshops offered at the 2018 National Patient Education Conference (7/27-29) in Philadelphia are the following:
Research Progress: New Directions
John Varga, M.D.
Renal Crisis
John Varga, M.D.
Early Bird Registration closes 5/30/18.
Have you registered yet?
scleroderma.org/conference.
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Kids & Teens at National Conference
The Kids & Teens program at the National Patient Education Conference is an exceptional experience for youth ages 6 to 17, who have scleroderma, or have a parent with scleroderma. Siblings and parents or caregivers benefit, too. The weekend is filled with fun learning and activities specific to their needs.
Early Bird Registration closes 5/30/18.
Have you registered yet?
scleroderma.org/conference.
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Inviting Research Grant Applications
New Investigators and Established Investigators are invited to submit research grant applications to the Scleroderma Foundation's Peer Review Grant Program. Applications and information is available on the Foundation website.
scleroderma.org/research
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Do You Have Scleroderma and PH?
Do you have scleroderma and pulmonaryhypertension? On myPHteam you don't have to hide your real true feelings and struggles with scleroderma and PH.
join to connect and be 'real' with people who know
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How Many Miles Does it Take to Cure Scleroderma?
Stepping Out to Cure Scleroderma walks are only a few miles. There are 60 Stepping Out walks each year, and last year 8,271 people registered to participate...so that's at least 1,488,780 miles. But it's not enough! We can't stop Stepping Out until we Cure Scleroderma!
be part of the cure, sign up to walk today!
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Support Groups of Oregon
Support groups enable individuals with scleroderma to connect and exchange information with others who face similar problems. Groups also host expert speakers from time to time. There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented. Each week, we highlight support groups associated with a particular chapter. The Oregon Chapter hosts two support groups.
Oregon support groups
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Free Online CME Course: "Increasing Physician Awareness of PAH in SSc"
The
Scleroderma Foundation is pleased partner with Med-IQ
to present a free online CME publication that discusses guideline
recommendations for pulmonary arterial hypertension (PAH) screening in patients
with systemic sclerosis (SSc). The article presents key insights on
available treatment options for PAH. In addition, it is enhanced with
audio clips from an expert roundtable discussion on the increased risk of PAH
in SSc, signs and symptoms that should prompt further evaluation for PAH, and
the importance of communication among the multidisciplinary team.
This 30-minute CME course expires
July 13, 2018,
so click on the link below to get started.
(Online CME Course: Increasing Physician Awareness of PAH in SSc)
Questions? Call (toll-free)
(866) 858-7434, e-mail info@med-iq.com, or visit www.Med-IQ.com/a1034.
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June is Scleroderma Awareness Month
The Scleroderma Foundation will again partner with the Scleroderma Research Foundation and Scleroderma Canada for our Hard Word, Harder Disease awareness campaign during the month of June. A "tool kit" will be available for you to share messages on Facebook and Twitter and other social media platforms.
www.sclerodermaaware.org
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| STUDY PARTICIPATION OPPORTUNITY |
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Seeking Young Adults with an Autoimmune Rheumatic Condition for Research Study on Fatigue
Researchers from the University of New Mexico (UNM) are seeking participants for a study on how fatigue affects life in young adults with autoimmune rheumatic conditions, such as rheumatoid arthritis, lupus, scleroderma, psoriatic arthritis, and ankylosing spondylitis. To be included, participants must be between 18-30 years old, have fatigue, cannot be pregnant, and communicate in English. The study involves completing a packet of questionnaires about fatigue and daily life and participating in a phone interview. This study was approved by the UNM Human Research Review Committee (Version 2 - HRPO#18-198).
Contact Janet Poole Ph.D., O.T.R./L., jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, O.T.R./L., carandangkm@gmail.com, (626) 722-8761
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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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