Brussels – 17th February 2014
B4B ATTENDED THE WORKSHOP
“SCIENCE AND INNOVATION: CLOSER THAN RARE!”
With the purpose of impacting the Institutional Leaders and the Society to the problem of rare diseases and encouraging constructive action on the part of policy makers, B4B actively participated to the Workshop “SCIENCE AND INNOVATION: CLOSER THAN RARE!” held at the European Parliament in Brussels on 17th February 2014.
The workshop, hosted by MEPs Maria da Graça CARVALHO, and Mario DAVID under the patronage of the Presidency of the Portuguese Republic, First Lady of Portugal Maria Cavaco Silva, was also attended by Tonio BORG, Commissioner for Health and Consumer Policy, European Commission.
During the meeting it was generally agreed that much of European research lacks overall coordination and remains a little fragmentary.
One of the big challenges with rare disease is diagnosis.
Diagnosing a rare diseases is in fact often a long and complex process. This is mainly due to the fact that scientific knowledge is generally insufficient and scattered. The development of joint actions and collaborative efforts were encouraged since cooperation is the crucial key necessary to overcome the gaps in research in the area of rare diseases in EU.
It was highlighted the importance of pooling knowledge, resources and expertise on rare diseases, funding related research and authorising the best possible medicines for these diseases.
Participants agreed to continue their hard work so that in the near future, each and every patient affected by a rare disease can access the best possible diagnosis and care.
Click on the files below for suggested reading
Graca Carvalho – speech and Tonio Borg – speech