The International Susac syndrome Consortium

Who we are and what we do

The International Susac syndrome Consortium emerged from a shared urgency to put the rare and often misrecognized condition, Susac syndrome, on the international map.

Our consortium brings together leading neurologists, scientists,  immunologists/rheumatologists, neuroradiologists, ophthalmologists, ENT specialists, and patients living with Susac syndrome.

We coordinate global collaborations to stimulate knowledge and data sharing, refine diagnostic and treatment protocols, and enable joint research projects.

To me, iSusac means working together worldwide for people with a unique rare disease. Only together can we make a difference!

Ilka Kleffner, Germany

Being part of this consortium means getting the chance to be as close to ongoing research as possible. It means learning and understanding, but above all: It gives me the opportunity to make the patient perspective more accessible to doctors and researchers—so that, hopefully, both science and patients can benefit as much as possible.

Katrin Hellmundt, Germany

Unmet needs

Many unmet needs exist in this ultra-rare disease.

For clinicians, for researchers, and for patients living with Susac syndrome

Major unmet needs are

  • Earlier and more accurate diagnosis
  • Biomarkers of disease activity and prognosis
  • Evidence-based treatment
  • Understanding the disease mechanism
  • Long-term outcomes
  • Patient-centred and care-delivery needs