Stronger together to solve the enigma's of Susac syndrome
The International Susac syndrome Consortium
unites
medical specialists, researchers and patients
globally
Our mission
As an International academic and research Consortium, we are committed to provide education, advance scientific research, to enable early diagnosis and intervention, and to improve quality of life for people affected by Susac syndrome
Our vision
Multistakeholder
We are open to all clinicians and researchers from various backgrounds, patients and patient representatives, who share our mission
Joining forces globally
Only by joining forces at an international level we will be able to make significant strides to better understand, diagnose and treat Susac syndrome
<a href="https://www.vecteezy.com/free-photos/brainstorm">Brainstorm Stock photos by Vecteezy</a>
Information
Clear medical explanation of the clinical triad: encephalopathy, branch retinal artery occlusions, and hearing loss
Scientific research
International studies and clinical publications contributing to new insights and better clinical care.
Steering Committee and Members
Meet our international board and network of physicians and scientists joining forces across borders.
News and membership
Blijf op de hoogte van congressen en artikels, of sluit u als specialist aan bij ons groeiende consortium.
International joint effort for an ultra-rare disease
Because Susac syndrome is an ultra-rare disease, cross-border expertise makes all the difference.
By sharing data, coordinating joint publications, and share experiences, we are paving the way for improved mechanistic understanding, faster diagnosis and targeted interventions that matter to patients.
Our core values
Excellence - Innovation - Collaboration - Integrity - Impact
Help to build the future of our research
Scientific progress requires dedication, expertise, and resources.
Whether you are a clinician, a scientist or patient advocate, interested to join our consortium, or would like to provide financial support for future research
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Every contribution brings us closer to better understanding and care for people living with Susac syndrome.