Communication materials

Communication materials

European commission communication materials

• General ERNs brochure
• Booklet - European Reference Networks: A success story for patients living with a rare disease - Public Health
• Factsheet 1: Patient story - Onni (Available for download in all 24 official EU languages)
• Factsheet 2: approval, evaluation and EU funding (Available for download in all 24 official EU languages)
• ERN Patient flyer

ERN GENTURIS posters

• ERN GENTURIS poster - General
• ERN GENTURIS poster - Roadmap

ERN GENTURIS booklets

Thematic group 1: Schwannomatosis and Neurofibromatosis

• Neurofibromatosis 1
• NF2-related schwannomatosis
• Non-NF2-related schwannomatosis

Thematic group 2: Lynch syndrome and polyposis

• Lynch syndrome

ERNs communication materials

• Inside the ERNs – Q&A Series | Episode 1: Introduction to Genetic Counselling
  In this episode of the "Inside the ERNs – Q&A Series", we explore what genetic counselling is and why it is important. Jackie Turner, Genetic Counsellor at Mater University Hospital Dublin and Prof. Hélène Dollfus, ERN EYE Coordinator at Strasburg University Hospital discuss who is involved in genetic counselling and who should consider seeking these services. They outline the situations in which someone may want to consult a genetic counsellor and explain how genetic counselling can help individuals or families make informed decisions. Susana Carvajal Aronja, ePAG for ERKNet, joins the discussion to emphasise the significance of genetic counselling from a family perspective.
• Inside the ERNs – Q&A Series | Episode 02 - Understanding Genetic Testing: to Test or not to Test?
  The second episode highlights what genetic testing is, the various types of genetic tests available, the information they provide and the impact genetic test results can have on personal and medical decisions.
• Inside the ERNs – Q&A Series | Episode 3: The Importance of Newborn Screening
  In this episode of "Inside the ERNs – Q&A Series", Prof. Maurizio Scarpa, MetabERN Coordinator and Prof. Jim Bonham, President of the International Society for Neonatal Screening, discuss the importance of screening for the early diagnosis of rare disorders. This episode provides an overview of the various types of newborn screening tests, the differences in screening programs across EU countries, and how screening results are communicated to parents ensuring clarity and understanding. David van Bennekom, ePAG for ERKNet, also shares the family’s perspective on the significance of newborn screening and the importance of early detection in the management of rare disorders.
• General ERN video (ERN eUROGEN coordinator Prof. Peter Mulders)