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28th February: Rare Disease Day 2017 is here!

'With research, possibilities are limitless'

January 31, 2017

As every year, this 28th February Rare Disease Day will be held around the world with the aim of raising global awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The Rare Disease Day 2017 theme is research and the slogan is “With research, possibilities are limitless”. Get involved with Rare Disease Day 2017!

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e-ENERCA Final Public Report is available!

November 26, 2016

 e-ENERCA has come to an end reaching its main goal, to provide professionals and patients with e-Health tools to assure the same level of RA services across Europe, independently from the country of practise and the origin of the patient. e-ENERCA also aimed to promote the recognition of Centres of expertise by the national health authorities necessary for its promotion and its recognition as a European Reference Network (ERN) on RAand to assess the implementation of the new Directive 2011/24/EU. Although it has not been easy the three platforms foreseen for eRegistry, Telemedicine and eLearning have been developed and implemented in ENERCA website. If you want to know more download the e-ENERCA Final report!

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New collaboration among EU and US to boost medicine development on Rare Diseases

The clusters established by EMA and FDA focus on areas where the parties involved could benefit from an intensified exchange of information and strengthened collaboration.

November 7, 2016

The creation of this cluster is the latest step in EMA’s and FDA’s wider objective to expand and reinforce international collaboration. The currently existing EMA/FDA clusters discuss issues related to patient engagement, biosimilars, orphan medicines, medicines to treat cancer, medicines for children, and pharmacovigilance, among other topics.

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Know about Little Bernat!

Bernat is a young boy who suffers from a grave case of the rare hemolytic disease known as Pyruvate Kinase Deficiency

October 3, 2016

Bernat is a young boy who suffers from a grave case of the rare hemolytic disease known as Pyruvate Kinase Deficiency. Little Bernat has a wonderful website to inform people about PK Deficiency and to raise global awareness about the little things that people can do to help children like Bernat.

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First Rare Barometer Voices survey on the impact of rare diseases on daily life

The survey is the first to be launched under Rare Barometer Voices EURORDIS initiative

September 15, 2016

EURORDIS has developed the Rare Barometer Voices, a new interactive survey panel available in 23 languages that collects the experiences of people that are living with or affected by a rare disease. The first stage of the study is now open!

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eENERCA Closing Meeting - 2nd September, block your agenda and join us!

The Closing Meeting will join ENERCA partners to present the e-platforms and the potential recognition of the ERN in Rare Hematological Diseases

July 27, 2016

eENERCA project is coming to an end the upcoming month of September. On behalf of ENERCA team, we are delighted to invite you to eENERCA Closing Meeting to be held the 2nd September 2016 in Barcelona. The aim of this closing meeting is to join together all eENERCA partners in order to: Present the e-platforms and final outcomes from this fourth phase of ENERCA project and present the potential sustainability of the network with the achievement of EuroBloodNet, the proposal sent to the European Commission for the recognition as European Reference Network in Rare Hematological Diseases.

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New Master in advanced medical skills - Rare Anaemias and related disorders

The master deals with the basic aspects of the pathology of erythropoiesis with clinical manifestations of anaemia due to failure of the bone marrow and/or red blood cell

July 27, 2016

The aim of the master's degree in advanced medical skills is to provide specialized health training for medical graduates, to increase their competences in the area the rare anaemias and related conditions.

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Check the webcasts of ESH-ENERCA Training Course on Diagnosis and Management of Very Rare Red Cell and Iron Disorders!

Watch the presentations of the last training course on iPhone/iPad/Android devices with "TALKS on the GO™" App or ESH eLearning!

June 28th, 2016

Under the scientific direction of Patricia Aguilar Martinez, Paola Bianchi, Achille Iolascon, Richard Van Wijk, Alberto Zanella, webcats of ESH-ENERCA Training course give you the privilege of viewing these expert talks at any place (and now even on your iPhone, iPad or iPod Video), enhacing your learning experience and knowledge.

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ENERCA Telemedicine platform is already available!

Telemedicine platform facilitates remote diagnosis orientation of complex cases by building a bridge among health professionals in distant locations and experts in rare anaemias

May 30, 2016

The ENERCA Telemedicine platform facilitates remote diagnosis orientation of complex cases by building a bridge among health professionals in distant locations and experts in rare anaemias leading to a faster and more accurate diagnosis and consequently, to a better care of the patient.

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European Patient Advocacy Group patient representatives have been announced

EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation in the decision-making processes around European Reference Networks (ERNs).

May 17, 2016

EURORDIS has developed ePAGs for each ERN disease grouping. ePAGs bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN decision-making processes and a democratic process of patient representation.

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