A holistic and centralised approach to supporting patients with rare diseases

• Author: Directorate-General for Employment, Social Affairs and Inclusion (European Commission)
• Pages: 28-29

Problem addressed

In Romania, approximately 1.3 million people are af‌fected

by rare diseases, 90% of whom do not receive a correct

diagnosis or adequate medical care. Although declared a

national priority in Romania’s National Health Strategy in

2014, rare diseases are oen not adequately addressed

by the national health system due to their small and

disconnected patient populations, the lack of knowledge of

doctors on rare diseases and the lack of diagnosis centres,

leading to fragmented medical and social services.

Innovative solution

The Pilot Reference Centre for Rare Diseases, NoRo,

launched in 2011, is a one-stop-shop for people living with

a rare disease in Romania. It takes a holistic and centralised

approach to rare disease care, combining medical, social

and educational services for patients and their families.

Patients at the NoRo Centre have a designated case

manager who provides them with guidance and counselling

through all of the dif‌ferent services available to them. The

centre was set up by the Romanian Prader Willi Association,

in partnership with the leading Norwegian Frambu Resource

Centre for Rare Disorders.

NoRo raises awareness of rare diseases on a national scale.

It has trained almost 500 health specialists and doctors

and brings together a network of 50 pro-bono doctors to

work collaboratively on an information website about rare

diseases, a national online map of services, and guidelines

and magazines for patients and professionals. The centre

also works with schools to raise the empathy level of

teachers and pupils via role-playing and debates around the

topic of rare diseases.

A holistic and centralised approach to

supporting patients with rare diseases

The NoRo Centre

Romania

SOCIAL INNOVATION: INSPIRATIONAL PRACTICES

SUPPORTING PEOPLE THROUGHOUT THEIR LIVES

28

© Domi Istvan, 2018

A young patient receives treatment at the NoRo Centre