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|eLetter #714 | June 2, 2017
Make Others Scleroderma Aware
June is here, which means it is time to double our efforts to get the
word out to more people. Once again, the
Scleroderma Foundation is joining forces with Scleroderma Canada and the
Scleroderma Research Foundation to raise awareness of our devastating disease.
The “Hard Word. Harder
Disease.” campaign has been an effective knowledge building tool. Last year alone the
campaign served over 5 million impressions on
people you know, and people your friend’s friend knows.
With your help, this year’s campaign will continue to
make waves. First, go to www.HardWord.org and take the pledge to tell others about scleroderma and if you have
already done so, direct your friends and family to the site. Second, share the
stories, share the pledge and make others more aware through your personal and
social media network.
Thanks for adding your
voice to scleroderma awareness.
PHA On the Road Offers Patient-focused Education
PHA on the Road is a FREE day-long education and networking program that
may be coming to a city near you.
This patient-focused program offers interactive presentations,
educational sessions, opportunities for patients and their families to
meet others living with PH and speak with local PH experts.
#PHAontheRoad will be held in St. Paul, MN; Providence,
RI; Portland, OR and Pittsburgh, PA. Register now for the chance to
meet others living with PH and speak with local PH specialists.
Read more >>
For Our Friends in the Lupus Community
Lupus and Allied Diseases Association, the Lupus Foundation of America,
and the Lupus Research Alliance have partnered to hold an
Externally-Led Lupus Patient-Focused
Drug Development (PFDD) Meeting called "Lupus: Patient Voices" Monday, Sept. 25, 2017, at the College Park Marriott Hotel and Conference Center near Washington, D.C.
We need to get as many
people with lupus as possible to complete the survey (link below) to gather input
from a diverse patient population to inform the Food and Drug Administration (FDA) and to
also drive the content of the meeting. We believe the meeting provides
FDA staff an excellent opportunity to hear patient viewpoints about lupus;
including the symptoms and impacts to daily life, as well as their perspective about existing and future treatments. This will help inform the agency's
decisions during the drug development and review process.
To learn more, download a flyer. You can also visit this website. People are encouraged to take this survey to share their lupus story.
By working partnering together with the lupus community, we can help improve the lives of others living with chronic rheumatological diseases.
Find a Scleroderma Walk Near You
This month, many of our chapters and support groups are hosting "Stepping Out to Cure Scleroderma" walk/run events. This is a great opportunity to connect with old friends, meet new ones and walk in honor or memory of someone affected by scleroderma.
commemorate World Scleroderma Day on June 29, 2017, the National Office of the
Scleroderma Foundation is hosting a VIRTUAL “Stepping Out to Cure Scleroderma”
We encourage you to participate locally whenever possible. But, either way, you'll be supporting an excellent cause and will have a great time.
Read more >>
|Clinical Trial Opportunity
For Patients with Scleroderma-associated Pulmonary Arterial Hypertension (PAH)
A NIAID-sponsored clinical research
trial is evaluating the drug Rituximab in treating systemic
sclerosis-associated pulmonary arterial hypertension (PAH). Systemic sclerosis
(SSc), or scleroderma, is an autoimmune disease in which
the immune system mistakenly attacks large areas of skin and organs
such as the heart, lungs, or kidneys. Pulmonary arterial hypertension is
among the most serious complications of SSc. This study looks at a new
approach to treating the cause of the disease.
Visit ClinicalTrials.gov (identifier NCT01086540) to see full eligibility criteria and study site locations at
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.