Diagnosis, information to the patient, genetic counselling

The time of diagnosis is a very emotional life changing time for patients and their families. Whether genetic or not, diagnostic tests are provided by many entities, and can be announced by many different types of professionals with different experiences and backgrounds.

 

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Different positions exist on what kind of diagnoses that should be the target of testing and what really are the best practices in the announcement of a diagnosis, the correct information to provide to the patient and their family or the professional that should be responsible in providing this information.

The circumstances under which the announcement is made can have a significant impact on the acceptance of having the disease and the subsequent decisions they make that influence the care of the patient at hand.

Common practices do not exist across Europe – neither about which diagnosis to test for nor about how to provide the patient with the information. In many countries genetic counselling is not even recognised as a profession

Page created: 21/02/2011
Page last updated: 07/11/2014
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases