The preparation of a European action plan for rare diseases, asks Dimitris Tsiodras, with his question to the European Commission. Specifically and on the occasion of Recent adoption of the resolution for rare diseases by the World Health Assembly, Asks the Commission that it intends to help improve early access to patients with rare and unacceptable diseases to diagnosis, treatment and support services.
THE MEP and a spokesman for the New Democracy Eurogroup emphasizes that ‘the Number of people with rare diseases in the EU is estimated at 30 million while the number of rare is estimated at 6-8 thousand»By adding that Diagnosis can last over five years while many people with rare illness never receive timely or sufficient diagnosis.
He points out that ”The high cost of treatments, unequal access to treatments and limited availability and geographical dispersion of experts and experts across Europe result in people living with a rare disease having difficulty access to care and support they need.».
Making special reference In the Greek Prevention Program and in the thousands of lives saved thanks to these preventive exams, He concludes the Commission that it intends to provide technical support for the strengthening and implementation of national policies for rare diseases and that it will enhance cooperation, networking and exchange of knowledge between specialized health care providers to improve expertise in the field of diagnosis.
Following the text of the question:
Question with a written response request to the committee
Subject: Improve Access to Diagnosis and Treatment for People with Rare Diseases
The number of people with rare diseases in the EU is estimated at 30 million while the number of rare diseases is estimated at 6-8 thousand.
Diagnosis can last for more than five years while many people never receive timely or sufficient diagnosis.
At the same time, the high cost of treatments, unequal access to treatments and limited availability and geographical dispersion of experts and expertise centers result in people with rare diseases having difficulty access to care and support.
The Commission is asked:
Following the adoption of the resolution for rare diseases by the World Health Assembly, will it develop an action plan for rare diseases with the aim of implementing the provisions of the resolution?
How will it help improve the early access of patients with rare and non -diagnosed diseases in diagnosis, care, treatment and support services?
Following successful national prevention programs for other diseases such as the Greek “prevent”, how does it intend to provide technical support for the strengthening and implementation of national policies for rare diseases and how to enhance the cooperation, networking and exchange of knowledge between specialized health providers?