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Atypical Hemolytic Uremic Syndrome (aHUS) International Day: 24th September, do not miss it!

Organizations from 13 countries promote September 24 as aHUS worldwide day to give visibility to this very rare disorder

September 16, 2015

With the aim of increasing public awareness about this very rare disease, several activities will take place around the world. Spanish Association for aHUS (ASHUA) will be one of the coordinator in this International Day.

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Professor Joel Corberand dies at the age of 72 years

Prof. Corberand was a dedicated and exceptional ENERCA partner for the Continuing education by e-learning in hematology

August 31, 2015

Professor Joel Corberand, dedicated to vocational education by e-learning in Laboratory Medicine in the Laboratory of Hematology in Centre Hospitalier Universitaire (CHU) of Toulouse, passed away last August 14th at the age of 72 years. From ENERCA we would like to express our most sincere condolences to his family, friends and loved ones.

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ENERCA publishes a report in the new "Journal of Rare Disorders: Diagnosis and Therapy”

The new open access Scientific Journal is focused on articles of rare and chronically debilitating diseases

August 25, 2015

The report entitled: “ENERCA: The European Network for Patients with Rare Anaemias.” and developed by Prof. Joan Lluis Vives Corrons and Dr. Maria del Mar Mañú, presents the main contribution of the network to the field of Rare Anaemias as well as the Health Services provided in the last decade.

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2015 Sultan Bin Khalifa International Thalassemia Awards

Process for submitting proposals is opened until 30th September

August 11, 2015

This edition has been established by H. H. Sheikh Sultan Bin Khalifa Al Nahyan Humanitarian & Scientific Foundation in collaboration with ENERCA partner, Thalassemia International Federation (TIF), and includes three categories: International Awards, Arab Awards and National Awards.

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Realising European Reference Networks for Rare Diseases: a preparatory workshop for the RD field

Follow the road to the European Reference Networks

July 30, 2015

Last 1-2 July ENERCA was present in the workshop “Realising European Reference Networks for Rare Diseases: a preparatory workshop for the RD field”, held in Brussels by EUCERD.

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European Year for Rare Diseases 2019: Vote and make a difference!

The Campaign for a European Year for Rare Diseases 2019 has started

July 14, 2015

Getting as many signatures as possible is essential to support the nomination of 2019 as the European Year for Rare Diseases! Be part of the European rare disease movement and help to ensure rare diseases a continuous public health priority. Make a difference!

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Join the 6th European Symposium on Rare Anaemias this November

The symposium will take place in Amsterdam (The Netherlands), with the 1st Dutch-Belgian Meeting for Patients and Health Professionals

June 15, 2015

6th European Symposium on Rare Anaemias - 1st Dutch-Belgian meeting for patients and health professionals will be held in Amsterdam (The Netherlands) next 21st and 22nd November 2015.  Inscriptions are already opened! We are willing to see you this November in Amsterdam!

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“Rare Disease Registries in Europe”, an updated list of the current situation in the European Union

Orphanet publishes an updated report on Rare Diseases Registries in European Union

June 12, 2015

Orphanet has recently published “Rare disease Registries in Europe”, an updated document that collects all the information regarding specific rare disease or group of diseases in the European Union or other participants in the consortium Orphanet countries. A pan-European interoperable electronic Registry for major Rare Anaemias and other epidemiological health records is currently being developed by ENERCA.

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Thalassaemia International Federation granted with Dr. Lee Jong-wook Memorial Prize in the 68th World Health Assembly

TIF’s Board of Directors have expressed their most sincere appreciation to those who have shown confidence and have recognised its impact and value through the receipt of this prestigious award.

June 3, 2015

This prestigious prize rewards TIF's outstanding worldwide contribution to public health, ensuring equal access to quality health care for every patient with thalassaemia and other haemoglobin disorders across the world since its establishment in 1987.

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8th May: International Thalassaemia Day is here!

2015 is focused on "Enhancing partnership towards patient-centred health systems: good health adds life to years!"

May 8, 2015

As every year, Thalassaemia International Federation (TIF) celebrates these special day focusing on different topics. 2015 is the year of "Enhancing partnership towards patient-centred health systems: good health adds life to years!" aiming to achieve a change in healthcare system by becoming more patient-centred.

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