After nearly nine months of effort involving an amazing team of volunteers, the brand-new Scleroderma Education Project website is now live!
When the first version of the Scleroderma FAQ™ was published online in 1996, there was almost no information available online about systemic scleroderma on the then very new Internet. Now, the Scleroderma Education Project is a major source of research-based educational information about systemic scleroderma for patients, family members, and clinicians. Over the past six months, we have had about 30,000 unique visitors to our website. Half of our traffic is from the US; the rest is from 168 countries around the world.
We have expanded our mission beyond patient education. Here is an abbreviated version of our new mission statement:
- Patient Education – Our primary mission is to provide comprehensive, up-to-date, research-based information on systemic scleroderma diagnosis and treatments written in a manner that patients can readily understand.
- Clinician Resources – Resources like our Scleroderma FAQ and our series of articles on ANA and antibodies can provide practical, research-based information about systemic scleroderma diagnosis and treatment for clinicians who are not scleroderma experts.
- Research – There is a significant body of research that documents abnormal blood rheology (increased overall blood viscosity and abnormal clumping of red blood cells) in people with systemic scleroderma. Our research focus is on better understanding the role of this abnormal blood rheology in the development of systemic scleroderma and determining if treatments that target this early stage of the disease process may be more effective and safer than current treatment approaches that focus on immunosuppression.
Even if you are a frequent user of our previous website, please visit the new website. There is a lot of additional material on the new website, including a new section focused on research. In addition, every single article and blog post has been updated to reflect current research.
We would love to hear your comments about how the Scleroderma Education Project has helped you in the past and what you think about the new website. We will compile your comments and share them in a future post. Email your comments to: firstname.lastname@example.org. Please indicate if you are a patient, potential patient, family member, or a clinician. Also, let us know if we can share your comments online, and if so, whether to use your name, initials, or just anonymously.
Are you a member of a local, regional, or national scleroderma support organization? Please contact your organization (s) and tell them about the Scleroderma Education Project (SclerodermaInfo.org).
The Scleroderma Education Project is a 501(c)(3) non-profit organization (EIN: 81-1450999). We are completely staffed by volunteers and entirely funded by individual donations. Without the generous donation of time and expertise from a lot of different individuals, this new website would never have been created.
I specifically want to acknowledge:
- Susan Kwolkoski, who pointed out the need for a new website and also hooked us up with Catchafire, a non-profit organization that links professional volunteers with non-profit organizations.
- Lea W., who designed our new website. She is a Catchafire volunteer. You can find Lea’s contact information on our website under Ackowledgements.
- Julian Garcia, who implemented our website. Julian is also a Catchafire volunteer located in London. You can find Julian’s contact information on our website under Acknowledgements.
- Our all-volunteer staff: Diane Schwartz, Diane Lucente, and Cam McCarthy, for their generous contribution of their time and talents.
- Our Medical and Research Advisory Boards, who keep us focused, make sure that the information on our website is as accurate as possible, and help to ensure that our research efforts are always based on sound scientific principles.
If there is anything we can do to improve the Scleroderma Education Project, please let us know. You can use the comment form on the website or email us directly at email@example.com.