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Rare Lives, the photographic journey that aims to investigate needs, hopes, difficulties, but above all, joys and daily achievements of those living a "Rare Life"

March 24, 2017

Rare Lives project wants to give the 30 million people living with a rare disease in Europe the visibility and strength, raising awareness and attention of the citizenship on rare diseases through the construction of a network which combines the experiences of those living the condition of rare patient and those who are not. Take a look on the journal!

Watch out the European Reference Networks video, flyer and brochure!

March 15, 2017

After the kick off conference held last 9th and 10th March in Vilnius, a set of dissemination material (flyer, brochure and video) have been prepared by the European Commission with the aim of rising awareness on the meaning, objectives and expected outcomes of the 24 ERNs. 

EuroBloodNet, the European Reference Network on Rare Hematological Diseases, awarded by the EC as one of the approved ERNs

March 11, 2017

The first 24 ERNs approved last December were awarded  in a two-day conference held 9th-10th March in Vilnius organized by the European Commission and the Maltese Presidency of the Council and hosted by the Ministry of Health of Lithuania with more than 600 participants. The ERNs cover 24 clinical areas and bring together more than 313 hospitals and almost 1000 healthcare units of expertise across 25 EU countries and Norway. One of the approved networks has been EuroBloodNet, the ERN on Rare Hematological Diseases, resulting from joint efforts of the European Hematology Asssociation (EHA), and ENERCA.

Orphanet releases its new website celebrating its 20th anniversary

March 10, 2017

Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997 with the aim to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Celebrating its 20th anniversary, Orphanet has enveiled its new website with an easier navigation and reading and searching options and responsive design. Check it out in www.orphanet.net !

EURORDIS Awards 2017 for excellence in the field of Rare Diseases

February 24, 2017

The EURORDIS Awards & Black Pearl Evening is held every year to mark the occasion of Rare Disease Day and recognize 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. This year, the winners of the EURORDIS Awards 2017 were announced at Black Pearl ceremony in Brussels on February 21st by Vytenis Andriukaitis, European Commissioner for Health and Food Safety. 

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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

Pan-European Consensus Conference on Newborn Screening for Haemoglobinopathies

April 29-30, 2017

Berlin, Germany

Sickle cell disease (SCD) is a target condition of the national newborn screening (NBS) programs in only five countries (France, Greece, The Netherlands, Spain and UK). However, the importance of SCD screening is increasingly acknowledged as a global challenge all over Europe and various regional programs as well as pilot studies have been initiated during last years. This Conference aims to evaluate the current situation of SCD NBS in Europe and general and discuss the pertinence of the various screening strategies.  For more information please go to Pan-European Consensus Conference on Newborn Screening for Haemoglobinopathies website

Organizing committee: Elena Cela, Madrid Raffaella Colombatti, Padua Jacques Elion, Paris Stephan Lobitz, Berlin

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)  

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