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“Living with Thalassaemia”: a video challenge from TIF

Share your story of positivity, strength, treatment, support and success in a short video

July 4, 2017

The video challenge invites people living with thalassaemia to share their story in a short video. Thalassaemia International Federation (TIF) asks for stories of positivity, strength, treatment, support and success. 

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Join us at the next ESH-ENERCA Training Course on Haemoglobin Disorders

On January 23-24 ENERCA and ESH will join their efforts in Barcelona to tackle rare anaemias.

June 27, 2014

Continuing Continuoing medical education is a key tool in the fight to raise awareness  of rare anaemias. For this reason ENERCA has established d a close partnership with the European School of Haematology (ESH). The next ESH-ENERCA - Training Course on Haemoglobin Disorders will be held in Barcelona on January 23-24, 2015.

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EUCERD Joint Action Workshop Report: Orpha codes in Health Information Systems

A new version of the International Classification of Diseases is being curated with the participation of Orphanet

June 20, 2014

It is necessary to share a common language code when recording, describing and discussing scientific achievements. The fact that nowadays rare diseases are not properly covered in coding standards adds another difficulty to the fight against rare diseases.

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New ENERCA Flyer

An invitation to visit our website and interact with it

May 30, 2014

ENERCA is evolving. Today it is engaged in the design of e-Health tools to ensure the same level of access to rare anaemias services across Europe.

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Irene Norstedt talks about rare disease’s grant situation in Europe and IRDiRC

Watch online the Deput Head of Unit Personalised Medicine at European Commission

May 22, 2014

The Deput Head of Unit Personalised Medicine at European Commission offered a presentation to summarize the Grant frameworks for rare diseases available in Europe. Watch the talk offered last March during the Worldwide Orphan Medicinal Designation Workshop held in London.

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TIF honoured the International Thalassaemia Day

This year’s theme was: “Economic Recession: Observe – Join forces – Safeguard Health”

May 18, 2014

Every year for the International Thalassaemia Day, on the 8th of May, Thalassaemia International Federation (TIF) honours this day through different activities. All of them aim to promote awareness and education around the world in 117 member associations of TIF in 56 countries.

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ENERCA participates in a Workshop on European Reference Networks

ENERCA was selected as an example of network to share its current tools and experiences

April 2, 2014

The coordinator of ENERCA, Prof. Joan Lluís Vives Corrons, was invited to explain the organization model designed for the fourth phase of the project, e-ENERCA. The debate celebrated in Brussels last March 25 2014 focused on IT tools and networking elements.

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Belgium, UK and Germany move forward in the fight against rare diseases

All three countries presented recently their national Plans and Strategies

March 17, 2014

All three countries presented have recently presented their Plans and Strategies in the fight against rare diseases. This kind of documents organizing the fight against rare diseases in European countries are necessary to reach a more harmonized and effective clinical care.

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ESH Interactive Poster Sessions from the Annual Meeting 2013, now online

Presentations by investigators involved in cutting-edge studies

February 24, 2014

The European School of Haematology (ESH) recently shared online the Interactive Poster Sessions from the Annual Meeting 2013, which was held in New Orleans, Louisiana. Watch these interesting sessions online and receive up to date knowledge on rare anaemias.

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A beautiful video for the 2014 Rare Disease Day

This year's video shows the many facets of "caring"

February 17, 2014

28 February 2014 marks the seventh international Rare Disease Day coordinated by EURORDIS. Hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness-raising activities. The traditional video to present the new campaign is out. Again, it is encouraging, heartfelt and beautiful.

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