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Scleroderma Foundation
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eLetter #714 | June 2, 2017  

Make Others Scleroderma Aware

HardWord.org

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.

Sclero Aware

PHA On the Road Offers Patient-focused Education

pha on the road.jpgPHA 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.

This year #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

The 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

Find a WalkThis 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.

To commemorate World Scleroderma Day on June 29, 2017, the National Office of the Scleroderma Foundation is hosting a VIRTUAL “Stepping Out to Cure Scleroderma” walk-a-thon!

We encourage you to participate locally whenever possible. But, either way, you'll be supporting an excellent cause and will have a great time.

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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 https://www.clinicaltrials.gov/ct2/show/NCT01086540.
 
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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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