- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
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.
Download kit
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
Related eNews:
Find out the latest news from the rare disease community! We comply with the HONcode standard for health trustworthy information
We are grateful for the financial support of the EURORDIS website by:
This website received funding under an operating grant from the European Union’s Health Programme (2014-2020)
The voice of rare disease patients in Europe
The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiative
Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative
The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiative
Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative