A holistic and centralised approach to supporting patients with rare diseases

AuthorDirectorate-General for Employment, Social Affairs and Inclusion (European Commission)
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
© Domi Istvan, 2018
A young patient receives treatment at the NoRo Centre

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