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Call for interest for European Reference Networks will be launched 16th March!

The date of the launch of the call for interest for ERNs has been confirmed as 16 March 2016 and will be divided into two waves

March 14, 2016

Moreover, 7th April an Info Day will be held in Brussels to explain the call for ERN to the potential interested network applicants and to answer questions on this call.

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2016 EURORDIS Awards for Excellence in the Field of Rare Diseases

EURORDIS presented last 23th February its 2016 Awards for Excellence in the Field of Rare Diseases at Black Pearl Gala Dinner

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.

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2016 Rare Disease Day video out now! Do not forget: 29th February... Rare Disease Day!

With the theme “Patient Voice” and the slogan “Join us in making the voice of rare diseases heard” hundreds of events will be held around the world

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.

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Thalassaemia International Federation launches two brand new smartphone applications

ThaliMe and TIF's Digital Library are the new mobile applications dedicated to people living with thalassaemia

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.

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RD-ACTION launches an informal ERN ‘Matchmaker’ tool

The tool aims to facilitate discussions and collaboration between experts willing to join an ERN.

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.

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6th European symposium on Rare Anaemias: Presentations are already available!

Read the presentations and the summaries of the lectures given during the Symposium

December 21, 2015

Read the presentations and summaries of the lectures given during the event held last November 21st – 22nd in Amsterdam.

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The ESH-ENERCA course on Diagnosis and Management of Very Red Cell and Iron Disorders is approaching!

Mark your agenda! January 29-30, 2016 in Lisbon

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!

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The 2nd conference on European Reference Networks was held on 8-9 October in Lisbon

ENERCA participated on the Workshop 1: "How to prepare a successful proposal to build an ERN”

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.

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Enzyme Geocode: New section on the ENERCA Website!

European Epidemiological Geocode for prevalence of red blood cell enzyme deficiencies.

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!

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RELEVANCE: Regulation of red cell life-span, erythropoiesis, survival, senescence and clearance

The new Europea Project is searching for 15 early stage researchers, educate them, and engage into interactive multidisciplinary work within five major topics related to red blood cells

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. 

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