BioRad

Bio-Rad Laboratories, Inc. announced the release of the Bio-Rad Library of Variants - a compendium of HPLC cases. This Digital Library contains case reports of variants haemoglobin provided by a select group of reference centres belonging to the worldwide community of laboratories actively working on detection of sickle cell, thalassaemia and other haemoglobinopathies and aims to educate professionals with the experience and knowledge of the global health care community.

More information: Bio-Rad Library of Variants

TIF

The Thalassaemia International Federation announced the initiation of an MSc Programme (Blended) in “Inherited Haemoglobin Disorders,” a joint educational endeavour undertaken by the University of Nicosia (UNic), Cyprus. This is a unique Programme addressing a very specific and special topic with its faculty including world-renowned international experts. It is recognised globally and is supported by the European Haematology Association and the International Society of Haematology.

This Programme leads to an MSc degree with specialisation in Haemoglobin Disorders, mainly Thalassaemia and Sickle Cell Disease (SCD). The Programme is directed to medical professionals. However, even though usually the best candidates are Specialist Paediatricians, Specialist Haematologists and Internal Medicine Specialists, other disciplines may also greatly benefit from the Programme; e.g Blood Transfusionists and specialised nurses who have at least one university degree.

More information: M.Sc. Programme's website

thalcare

ThalCare is a web tool to facilitate the critical care and chronic management for thalassaemia patients in order to improve the quality of life of people suffering from these blood disorders and assist medical and nursing teams, enabling the centers to collaborate with multidisciplinary experts on-line.

The tool provides information and treatment assistance by tracking transfusions, chelation, vaccination and other key related issues. Moreover, ThalCare enables prevention of the disorder by cascade screening methodology and assesses the risk category for transplants that the child belongs to indicating suitability for bone marrow transplant.

ThalSense is an intelligence engine for the generation of alerts, suggestions and indications that serves for the management of the patients. Since this tool gathers data, generates reports and indicators on the progress of each patient and of the centres as a whole, ThalSense also serves as guidelines for local doctors.

On the other hand, ThalCare patient’s mobile app assures the empowerment of patients by enabling the access to medical records, scheduling medical visits, seeking help when emergency and having contact with other affected patients.

More information: ThalCare website, ENERCA News

orphanet

Orphanet, the reference portal for rare diseases and orphan drugs with partnerships in 40 countries, has published its annual activity report for the year 2015. It details the activities of Orphanet, while stressing the highlights of the past year, including updates of the Orphanet databases, tools and documents, improved transparency and traceability and upgraded international positioning.

More information: Orphanet Activity report [PDF], Orphanews

eurordis

Patients undoubtedly constitute one of the main cornerstones of the future European Reference Networks (ERNs), thus the involvement of patients organizations must be assured from the beginning in order to guarantee their pivotal role within the networks and, therefore, increasing the patients’ empowerment.

For this reason, EURORDIS has developed European Patient Advocacy Group (ePAG) 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.

The newly elected ePAG patient representatives have now been announced. In the context of rare haematological elected ePAG Patient Representatives are:

  1. Amanda Bok, European Haemophilia Consortium (EHC)
  2. Jan Geissler, Leukemia Patient Advocates Foundation
  3. Sophie Wintrich, MDS UK Patient Support Group (and MDS Alliance)
  4. Angelo Loris Brunetta, Associazione Ligure Thalassemici Onlus
  5. Ananda Plate, Myeloma Patients Europe

More information: EURORDIS, ENERCA News, list of ePAG representatives [PDF]

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