Since first hearing the word Scleroderm
What I learned was this is not a well known disease and sadly informatio
I am however thankful for this site and the knowledge that there are support groups is a tremendous
From this moment on my life will be dedicated to joining in the effort to bring awareness with the ultimate hope that a cure will be found in my life time yet being at peace in knowing that it will ultimately
When ...I was 13 years old i have had reconstruc
Its hard i am the only person i know who has this and i have no one to talk to that can relate to me in any way.
I admire your work, you inspire me and you have a place in my hart. You have also been there for me when ...I needed informatio
About me. I’m from Poland and were diagnosed with Morphea/
I can say it has changed me as a person, for the better.
What else I can say, I wish you all good luck. Love and light to you all and may your biggest dreams come true. I really would like to visit one of your local chapters during my trip to the US in September,
In observance of the Presidents Day holiday, Monday, February 19, the Scleroderma Foundation National Office will be closed. www.scleroderma.org
Grassroots Advocacy Webinar
"Using Your Voice to Meet with an Elected Official"
February 26, 2 p.m. ET
What does a scleroderma advocate do during Capitol Hill Day? Join our webinar on February 26 at 2 p.m. Eastern time to find out! Sit in on a mock meeting that's just like the ones patient advocates have in the offices of Congress members. This small group of advocates will likely include a patient who had undergone stem cell therapy, a parent or caregiver of a child with sc...leroderma, a patient who uses a medical device and an advocate who works in a chapter. Excellent opportunity to see what the day is all about.
Join Feb. 26 Webinar; Dial 302-202-5900;
Enter Conference ID 710-462-255
2018 Capitol Hill Day - April 16-18
CALLING ALL ADVOCATES!
The Capitol Hill Day 2018 application is now available. Included in the application form is a request for scholarship assistance. An application is required whether you’re applying for a scholarship or not. We need advocates from certain voting districts in California, Florida, Indiana, Kentucky, Louisiana, North Carolina, Oklahoma, Oregon, Tennessee, Vermont, Washington, and West Virginia....
Deadline to apply (scholarship and non-scholarship) is Wednesday, February 28, 2018.
What would you like to talk about today? Join the Scleroderma Foundations’ “Inspire” support group and discussion community.
Research Participation Opportunity
Cumberland Pharmaceuticals is conducting a research study to determine whether a drug product called ifetroban will prevent cardiomyopathy in patients with diffuse scleroderma or pulmonary arterial hypertension associated with scleroderma. Eligible subjects will be reimbursed for their time and travel.
For more information, please call 615-627-4121 or email firstname.lastname@example.org.
Diffuse cutaneous systemic sclerosis (dcSSc) is an autoimmune disease also known as progressive scleroderma. The BRAVOS clinical trial is currently enrolling scleroderma patients to determine the safety and tolerability of brentuximab vedotin, a drug that is FDA-approved for the treatment of Hodgkin’s and other lymphomas.
The BRAVOS study is being conducted at research centers across the United States. You may be eligible to participate in the BRAVOS study if you...:
• Are 18 to 70 years old
• Have been diagnosed with dcSSc
• Have had dcSSc for 5 or fewer years
• Are on ongoing immunosuppressive therapy with one of the following: methotrexate, mycophenolate mofetil or azathioprine
Learn more about the BRAVOS study on clinicaltrials.gov (NCT03222492) or the study website, www.bravos-study.org.
Join us at 11 a.m. Eastern!
JOIN us TODAY, Feb. 16 at 11 a.m. Eastern, for a special "FACEBOOK LIVE" event from the 5th Systemic Sclerosis World Congress. Robert Riggs, CEO of the Scleroderma Foundation, will facilitate an awareness discussion with an international panel of individuals living with scleroderma from Europe and the United States.
Join us at 11 a.m. Eastern today!
One-hour countdown: Please join us and the Scleroderma Foundation and Fesca - Federation of European Scleroderma Associations for a Facebook Live event from th...e 5th Systemic Sclerosis World Congress featuring three incredible people living with the disease. Please take the opportunity to ask questions about scleroderma and stay tuned to find out the answers!
We will share this Facebook Live event on this page.
Mark your calendars and join us, @SclerodermaUS and @fesca.scleroderma on February 16th for a #FacebookLive event from the Systemic Sclerosis World Congress... in Bordeaux, France.
Have a question? Comment below or tweet to us @BoheringerUS, and we’ll do our best to answer it during the event.
Join us tomorrow, February 16 at 11 a.m. Eastern, for a "Facebook Live" event from the 5th Systemic Sclerosis World Congress
Each person living with #scleroderma has a special story. On February 16 at 11 a.m. Eastern time, the Scleroderma Foundation's Facebook page will share a special "Facebook Live" broadcast from the 5th Systemic Sclerosis World Congress. Robert Riggs, CEO of the Scleroderma Foundation, will facilitate an awareness discussion with an international panel of individuals living with scleroderma from Europe and the United States.
Take one step closer to a cure for #scleroderma! Join us at a #SteppingOut to #CureScleroderma walk or run near you. Gather your family, friends, and coworkers to form a team. Create a fundraising page on the Stepping Out website and use the online tools to request donations and manage your team.
The scholarship application for the Scleroderma Foundation's 2018 National Patient Education Conference is available for download. The application deadline is March 21. Scholarships are available for adult's with #scleroderma, children with scleroderma, and parent caregivers of minor children with scleroderma. Priority is given to applicants attending for the first time.