February 26, 2016
The ceremony took place in Brussels last 23rd February within the Black Pearl evening, presented by Royal Highness Princess Astrid of Belgium and in presence of Rare Disease Day Ambassador Sean Hepburn Ferrer. The Awards recognizes outstanding patient advocates and organisations, volunteers, scientists, companies, media and policy makers who have contributed to reduce the impact of rare diseases on people's lives through the EURORDIS Awards for Excellence in the field of Rare Diseases.
February 2, 2016
In its ninth edition, the Rare Disease Day will recognize the essential role that patients play in voicing their needs and inviting to join rare disease community to all those that are not directly affected by a rare disease avoiding the isolation of patients and families.
February 1, 2016
ThaliMe app is the new mobile application that promises to improve the lives of people living with thalassaemia by giving them, their families and caregivers, a private mobile support network and a set of tools to simplify daily management and monitor overall health. TIF’s Digital Library provides users a powerful platform containing all TIF publications and informing them of TIF news and events from any device, anywhere, at any time.
January 21, 2016
The new Joint Action for Rare Diseases has launched an informal Rare Disease ERN “matchmaker” exercise to facilitate discussions and collaboration between experts willing to join an ERN. At intervals of approximately 3 weeks a spreadsheet of the responses received for each Thematic Grouping will be emailed to all those submitting their data under that same Thematic Group.
December 21, 2015
Read the presentations and summaries of the lectures given during the event held last November 21st – 22nd in Amsterdam.
December 1, 2015
The next ESH-ENERCA training course will be held in Lisbon on January 29-30, 2016. Through discussing hot topics such as disorders of red cell production and survival, the objective of this course is to promote harmonization of procedures for clinical and laboratory diagnosis, management and treatment of both, patients with rare red blood cell disorders and patients with rare disorders of iron metabolism. Registrations are already open!
November 4, 2015
On behalf of ENERCA Network, Joan Lluis Vives Corrons participated as expert in the Workshop 1 on “How to prepare a successful proposal to build an ERN” where explained briefly the huge importance of achieving the recognition of ENERCA as a ERN, and the challenges and practical steps related to the development of an ERN application.
October 27, 2015
The European Enzyme Epidemiological Geocode aims to give insight in the prevalence of this type of rare anaemia, but also in time to diagnosis and life expectancy. We invite you to participate!
October 27, 2015
ENERCA will collaborate with the new European Project "Regulation of red cell life-span, erythropoiesis, survival, senescence and clearance” (Acronym RELEVANCE), an international consortium of thirteen partners representing academic research centres, diagnostic labs, blood supply centres, and small industries that combines basic and translational research to improve prognostic, diagnostic and therapeutic approaches on red blood cells production, function, and clearance in healthy humans and patients.
October 9, 2015
The ESH-ENERCA course on Diagnosis and Management of Very Rare Red Cell and Iron Disorders will be held in Lisbon on January 29-30, 2016. Mark your agenda!