ERN-ITHACA can offer

  • Case by case evaluation by international experts

  • Highly specialised multidisciplinary care

  • Best practice guidelines for specific rare disorders

  • Affiliation to relevant patient groups

  • Latest news about research opportunities

  • A European ‘Rare Disease Patient Identity Card’

  • News about relevant meetings and events across Europe (and the UK)

Patients can access the resources and shared knowledge of ERN-ITHACA by being referred to one of the member Health Care Providers through standard local pathways.

We work alongside and have the same aims as patient groups including Eurordis, UNIQUE, SWAN, NoRo, EUROCAT and RD-Connect.