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28th February: Rare Disease Day 2017 is here!

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!

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!

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

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.

Know about Little Bernat!

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.

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

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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Agenda

British Society for Haematology Annual Scientific Meeting

March 27-29, 2017

Brighton, UK

It promises to cater to all Haematology specialists with an excellent scientific and educational programme in place covering the latest research and best practice. The three main days will be packed with more than 36 sessions and will open with a joint BSH/ASH session and close with a summary of key information from the meeting in the take-home messages. In between will be 27 educational sessions, 3 plenary lectures and 12 satellite symposia as well as free communication and 'meet the expert' sessions.

British Society for Haematology

21st ESH – EBMT Training Course on Haemopoietic stem cell transplantation

May 4-6, 2017

Dublin, Ireland

The objective of the course is to give opportunity to the attendees to have close contact and lively interaction with the teachers and the group in a nice setting. All slides will be available onsite. The speakers are chosen not only for their expertise in their subject but also for their teaching skills and willingness to discuss the field of transplant in both formal and informal settings. The course is suitable for physicians at all stages of their career and is particularly useful for those in training, for those who wish to develop their current practice to a more challenging type of transplant and also as an update for established transplanters. The program will include: • Plenary sessions • Clinical cases • Poster presentation • Breakfast meet the expert sessions • Meet the expert dinner

European School of Hematology and European Society for Blood and Marrow Transplantation.

22nd European Hematology Association Annual Congress

June 22-25, 2017

Madrid, Spain

The EHA Annual Congress provides a forum for presenting original unpublished data and sharing ideas for hematological innovation as well as disseminating evidence-based knowledge of primary clinical relevance. Hematologists and affiliated professionals attending the EHA Congress will be able to: Enhance their knowledge of evidence-based approaches on diagnosis and treatment for hematologic diseases. Access the latest results on clinical and translational research in hematologic disorders. Be updated on emerging innovative techniques, diagnostic tools and risk-assessment strategies in hematology and its subspecialties. Communicate, collaborate and network with representatives of a large international audience – medical professionals, national hematology societies, patient groups, medical industry and the media.

European Hematology Association (EHA)  

EQALM 2017 Symposium and General Assembly

October 19-20, 2017

Dublin, Ireland

The next EQALM symposium and General Assembly will be held in Dublin, Ireland on 19-20 October, 2017. Futher details will be published when available.

European Organisation for External Quality Assurance Providers in Laboratory Medicine (EQALM)

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