You are here: Home > News & Agenda > News

News

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.

Read more about "2015 Sultan Bin Khalifa International Thalassemia Awards"

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.

Read more about "Realising European Reference Networks for Rare Diseases: a preparatory workshop for the RD field"

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!

Read more about "European Year for Rare Diseases 2019: Vote and make a difference!"

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!

Read more about "Join the 6th European Symposium on Rare Anaemias this November"

“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.

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

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.

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

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.

Read more about "8th May: International Thalassaemia Day is here!"

European Commission designates an Orphan Drug for the pyruvate kinase deficiency treatment

Orphan designation was granted by the European Commission to CIEMAT/CIBERER/IIS-FJD for the “lentiviral vector containing the human liver and erythroid pyruvate kinase (PKLR) gene” for the treatment of pyruvate kinase deficiency

April 7, 2015

On August 2014, orphan designation was granted by the European Commission to Centro de Investigaciones Energéticas, Medioambientales y Tecnológicas-Centro de Investigación Biomédica en Red de Enfermedades Raras and Instituo de Investigación Sanitaria-Fundación Jiménez Díaz (CIEMAT/CIBERER/IIS-FJD), Spain, for the “lentiviral vector containing the human liver and erythroid pyruvate kinase (PKLR) gene” for the treatment of pyruvate kinase deficiency.

Read more about "European Commission designates an Orphan Drug for the pyruvate kinase deficiency treatment"

EURORDIS Awards 2015 for Excellence in the Field of Rare Diseases

EURORDIS presented last 26th February its 2015 Awards for Excellence in the Field of Rare Diseases at Black Pearl Gala Dinner

March 18, 2015

The EURORDIS Awards recognize the contribution of patients’ associations, caregivers, volunteers, scientifics, media and companies that contribute day-by-day, hand-in-hand to reducing the impact of rare diseases on people’s lives.

Read more about "EURORDIS Awards 2015 for Excellence in the Field of Rare Diseases"

FDA supports clinical trials for the definitive cure of beta thalassaemia through genetic engineering

The FDA supports two potential definitive treatments for beta thalassaemia that stem from the companies Bluebird bio and Sangamo BioSciences

March 4, 2015

State of the art scientific researches to achieve the cure for beta thalassaemia are closer than ever to reach their goals. The U.S. Food and Drug Administration (FDA) supports two potential definitive treatments for beta thalassaemia that stem from the companies Bluebird bio and Sangamo BioSciences.

Read more about "FDA supports clinical trials for the definitive cure of beta thalassaemia through genetic engineering"

Copyright © 2002 - 2017 Enerca

Co-funded by the Health Programme of the European Union.