News
Open Letter from Drs. Susac, Rennebohm and Egan
October 24, 2009
Dear Physicians, Patients with Susac Syndrome, and Patients' Families and Friends,
We are very happy to announce the official launching of this Susac Syndrome Website. The website is designed to address 4 important needs:
1. Education
Much of the website is devoted to provision of educational information about Susac Syndrome---for health care professionals, patients, families and family friends.
2. Research:
The website will serve as the official website for the Susac Syndrome-International Collaborative Study (Susac-ICS), a study designed to collect much-needed clinical information on patients from around the world, so that we can learn more about the clinical presentation, clinical features, clinical course, treatment, and long-term outcome of Susac Syndrome. We will be launching this study soon.
3. Advocacy:
The Website will eventually house a section, entitled "Patient and Family Support." This section will provide opportunity for patients and families to share their experiences and their thoughts regarding how patients and families can best be helped and supported. It will afford health care professionals an opportunity to hear and learn from the voices of patients and families who have experienced Susac's Syndrome.
4. International Susac's Syndrome Foundation:
One of our future plans is the development of an International Susac's Syndrome Foundation, to provide financial support for research and advocacy efforts.
The contact information on this website is primarily offered for questions regarding the Susac Syndrome-International Collaborative Study. We request that any questions about the diagnosis and treatment of an individual patient be channelled through the patient's physician.
Welcome to the website. We hope it will rapidly accelerate understanding of how to best help patients with Susac Syndrome.
Sincerely,
John O Susac, MD Rob Rennebohm, MD Robert Egan, MD
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