Page 39 - MemoriaER-Eng

www.ciberer.es

Participation in the “EUCErD Joint action: Working for Rare

Diseases”

The EUCERD Joint Action: Working for Rare Diseases (http://www.eucerd.
eu/?page_id=284) has been created to offer support to the European Union Com-

mittee of Experts on Rare Diseases (EUCERD), in aspects holding specific interest

for the committee that improve knowledge about Rare Diseases in the European
framework. This Joint Action, which commenced on March 1, 2012 and will support

EUCERD activities for 3 years, is funded by the Executive Agency for Health and

Consumers (EAHC) and led by Professor Kate Bushby, Vice-President of this com-
mittee of experts.

The CIBERER participates in this project as a partner and coordinator of work pac-

kage 7 (WP7) on the Quality of Life and Expert Centres in close collaboration with
the Ministry of Health, Social Services and Equality. The main task in this WP is

to identify those actions that allow improving access to better quality medical as-

sistance, covering the entire spectrum of services, from diagnosis, healthcare and
rehabilitation, to the efficient improvement of the quality of life of the people with

Rare Diseases (RD).

In 2013, CIBERER continued working on this important European translational field

activity, studying various initiatives of the Member States that seek to improve the
quality of life in the people suffering from a rare disease. Work this year focused on

the identification of good practices existing in Member State health systems, with
a special emphasis on those activities located in centres of expertise. The factors

affecting the decisions on policies relating to the quality of care in RD, as well as

the internal organization of the health systems will also be analyzed so that they
can be adapted to policies and to patients with RD.

Maintenance of healthcare translation collaboration agreements,

including patient registries for clinical research

The CIBERER has been entering collaboration agreements with a number of enti-
ties, many of which work in the translational field, for some time.

The most noteworthy of such agreements are the general agreements entered into

with the Spanish Federation of Rare Diseases (FEDER), Public Andalusian Progress
Foundation or the Medina Foundation, setting up stable channels for collaboration

offering consistence and continuity to any initiatives, programmes, projects and

actions aimed at the group of people with rare diseases that may be developed
jointly by both Institutions.

The importance of registries in the field of rare diseases must be highlighted
13
within the field of translational research.
20
T
Little documented information about the epidemiology of rare diseases makes it OR
obvious that there is a need to estimate the total number of people affected and P
RE
the prevalence of each disease, and to evaluate the natural history of rare disea- L
A
ses for the purpose of adapting healthcare to it and being able to improve disease NU
follow-up.
N
A
Therefore, in 2013 CIBERER continued working on the start-up and maintenance of R /
E
various registries, such as:
ER
B
CI

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