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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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Training Course on Diagnosis and Management of Very Rare Red Cell and Iron Disorders

Registration is already opened!

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!

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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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