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Rare Disease Day 2019 is approaching! Show your rare. Show you care.

February 28, 2019

 

Rare Disease Day is approaching and thousands of events are organised worldwide to celebrate this special day. The theme for Rare Disease Day 2019 is 'Bridging health and social care'. This theme places attention on the importance of bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.

 

RD-Connect invites ERN members to join the RD-Connect Community

In July 2018 the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals from diverse backgrounds, engaged in rare disease research anywhere in the world. Several ERNs have signed up as members, but you are welcome to register as individual healthcare professionals HCPs and research groups.

RD-Connect announces educational webinar series for ERN Stakeholders

August 21, 2018

RD-Connect is organising a series of webinars aiming to train ERN members on RD-Connect tools designed to help clinicians and researchers study and diagnose rare diseases.

Joint Action on Rare Cancers (JARC) and ERNs

August 20, 2018

 JARC works closely with the European Reference Networks (ERNs) to integrate and maximise the efforts of the European Commission, Member States and all other stakeholders with the aim of improving quality of care, and research on rare cancers

ERN video clip now available in all EU languages

August 19, 2018

A brief video explaining the main objectives of the ERNs and the concept of Share, Care Cure has been translated to all EU languages (except Gaelic) and Norwegian! Check it out to find out more on ERNs!

 

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Agenda

WORLD DAY PROGRAM OF RARE DISEASES 2019. VIII WORKSHOP "Investigate is moving forward"

February 28, 2019.

Madrid, Spain

CIBERER organizes the 8th edition of the "Investigate is Advance" Seminar that will take place on February 28 in the CaixaForum Madrid Assembly Hall (program attached). On this day, which is part of the celebrations of the World Day of Rare Diseases, researchers from the center and representatives of the affected people will present their collaboration in the search for diagnostics and new therapies. During the meeting will be addressed rare diseases undiagnosed and the current state of research in rare diseases in Spain. Also, two short videos produced by CIBERER will be released on concrete cases of successful collaboration of researchers and those affected.

European Red Cell Research Society 22nd Meeting “Red Cell Research on the Mount of Truth”

March 8 - 12, 2019

Monte Verità, Ascona, Switzerland

Red blood cell research is very dynamic, getting its new face from interdisciplinary multifaceted approaches. Clinical hematologists and researchers work side by side with engineers and pharmacologists in individual research groups, and large international consortia. Following the traditions of European Red Cell Club since its 1st meeting in Frankfurt am Main in 1976, the modern European Red Cell Society (ERCS) is at the center of these activities changing of our fundamental understanding of what red blood cells are. At the 22nd ERCS meeting, biologists, chemists, physicists, doctors, and innovative SMEs from all over the world will celebrate their achievements, exchange opinions, and move forward in merging science, translational medicine and technology related to Red Blood Cells.

Anna Bogdanova (University of Zurich) annab@access.uzh.ch Timm Schroeder (ETH Zurich) timm.schroeder@bsse.ethz.ch

International conference on ERYTHROPOIESIS CONTROL AND INEFFECTIVE ERYTHROPOIESIS: FROM BENCH TO BEDSIDE

March 15-17, 2019

Budapest, Hungary

 The main objective of this conference is to translate recent, novel data from basic research on the origin and developmental control of mega/erythroid progenitors in haematopoiesis to clinical practice. The meeting is structured with the specific aim to be translational “from bench to bedside”, and to involve participants in lively interactive discussions. It offers a unique opportunity to discuss basic science in a clinical context. This approach will notably involve the presentation and discussion of challenging clinical cases. The two and half day programme includes 9 sessions that will alternate basic science and clinical practice, with a focus on specific diseases such as CDAs, thalassaemia, SCD, haemolytic anaemias and MDS

European School of Haematology (ESH) 

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