Usher Initiative Austria

Goals:

Patient Advocacy Usher Syndrome and Rare (Eye) Diseases since 2014, connecting Austrian patients and patient organisations to international and national experts in Rare (Eye and Ear) Diseases

Connecting Austrian HCPs (Ear, Eye, Genetics) to international expertise and existing European Reference Network Centres in order to provide differential diagnosis of Usher Syndrome and other rare eye and ear diseases with similar phenotype

Empathic information and advice for Usher individuals and their families (parents) about symptoms, mechanisms, progression of the disease, future outlook, research and therapy options and Usher management

Access to clinical trials and treatment for Austrian patients with Usher Syndrom or similar rare diseases (syndromic, isolated)

Representation and Advocacy in national and international organisations: gicing patietn expertise at EMA (European Medicines Agency); linking patients (organisations), experts (healthcare professionals), researchers, clinicians, genticicts, politcal stakeholders, industry

ePAG ERN Eye; Cooperation with Pro Rare Austria; EURORDIS; Usher Syndrome Coalition, MA, USA, and "Leben mit Usher Syndrom", Germany;