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Join the ''TEST2CONTROL'' WEBINAR organized by TIF & Bio Rad Laboratories

8 May 2019

Dr. Michael Angastiniotis, Medical Advisor,
Thalassaemia International Federation (TIF)
Dr. Daniel E. Bauer, MD PhD

E-learning course in growth disorders and endocrine complications in youth and adults with thalassemia

February 28, 2019

This online e-learning module prepared that will support interactively the Thalasemia guide for Patients, and Thalasemia Guide for Hematologs and Nurses in the framework of the European EQUALITY project. The focus of the ICT-based training programme be hematologs and interested medical doctors. The module  include online tests.

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.

More news



Disease Models & Mechanisms Meeting 2019 ‘Blood disorders: models, mechanisms and therapies’

29 September - 1 October 2019

Boston, USA

Advancing basic research findings to the clinic remains a daunting task. Researchers in the field of hematopoiesis have made significant progress in this regard by taking discoveries from model organisms to the clinic. Such advances, including bone marrow transfers, stem cell replacements and immunotherapies, have also had a large impact on the treatment of non-blood disorders. This meeting on blood disorders and their treatment, organised by the journal Disease Models & Mechanisms, is curated by Editor-in-Chief Monica Justice, Nancy Speck, Paresh Vyas and Leonard Zon. The meeting will bring together diverse front-line researchers, stimulating discussions across basic research and clinical disciplines, and fostering collaborative links among researchers. Talks will feature basic research advances acquired across multiple model organisms, as they are applied to human blood disorders. A primary aim is to promote knowledge of therapies or drug discovery that has been developed pre-clinically to move to a clinical trial. Topics: Blood development: mechanisms and pathology Epigenetic regulation of blood development Erythropoiesis and red cell disorders Targeting blood cancers Clonal hematopoiesis Manipulating the stem cell niche

Monica Justice, Nancy Speck, Paresh Vyas and Leonard Zon

Global Globin 2020 (GG2020) Challenge Conference 2019.

28-30 October 2019

UNESCO Headquarters, Paris, France

Global migration and a high disease burden have put sickle cell disease and thalassaemia on the agenda in many countries worldwide. The GG2020 Challenge addresses the global health problems imposed by major haemoglobinopathies, with focus on advanced diagnostic technology and the systematic collection and sharing of variation and epidemiological data. The GG2020 conference is a great opportunity to forge new collaborations, share your knowledge, present your research and become part of the GG2020 network.

Malaysian Node of the Human Variome Project (MyHVP) Universiti Sains Malaysia Health Campus Tel: 09-7676531/ 6543 Email:



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