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| eLetter #765 | June 1, 2018 |
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June is Scleroderma Awareness Month
Scleroderma is a hard word to say. It’s a much harder disease to live with. One of the hardest things about scleroderma is that so few people are aware of the disease, researchers don’t get the resources they need.
Go to HardWord.org and take the pledge to spread the word and speak up for scleroderma.
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"Lung in Scleroderma" Webinar
JUNE 6, 11:30 A.M. ET
As part of Scleroderma Week at the American Thoracic Society (ATS) and in conjunction with Public Advisory Roundtable partner the Scleroderma Foundation, the ATS hosts a live webinar on Wednesday, June 6 at 11:30 a.m. Eastern, entitled "Lung in Scleroderma," and presented by Virginia Steen, M.D., of Georgetown University.
join the webinar
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Conference Workshop Preview
Among the informative workshops offered at the 2018 National Patient Education Conference (7/27-29) in Philadelphia are the following:
Pregnancy and Scleroderma
Scott Dexter, M.D.
Taking Care of Your Hands and Face:
The Importance of Stretches, Assistive Devices, and Protection
Janet Poole, Ph.D., O.T.R./L., S.W.C.
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 5 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.
Have you registered yet?
scleroderma.org/conference.
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What Everyone Affected by Rare Disease Should Know About the Orphan Drug Act
On June 12, 2 p.m. - 3 p.m. Eastern, join an educational webinar on the importance of the Orphan Drug Act, an overview of how a drug is developed, and common myths about the process. Led by Paul Melmeyer, director of federal policy for NORD (National Organization for Rare Disorders).
join the webinar
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Create an Emergency Kit
Here's a checklist to help you prepare an emergency kit with medications and medical supplies in the event you are displayed from home by a natural disaster like a hurricane or flooding, or for any other reason. Developed for PH patients, it can apply to anyone with medical needs.
learn more
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29 Stepping Out Walks in June
During 8 days in June, 19 different states will host 29 Stepping Out to Cure Scleroderma walks/5K runs. Be part of the cure and sign up to walk or run today. If you missed the deadline to sign up online, you can show up that morning, make a donation, and walk!
Be part of the cure, sign up to walk today!
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Support Groups of South Carolina
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 South Carolina Chapter hosts three support groups.
South Carolina 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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| 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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