Newsletter - February 2020

Keep informed about the latest information on Rare Hematological Diseases!

Rare Disease Day 2020 is almost here! Get involved!

Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

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Europe's Beating Cancer Plan was presented at the European Parliament on World Cancer Day

Europe's Cancer Plan will propose actions at every key stage of the disease: prevention (lifestyle, pollution, vaccination), diagnosis, treatment and survivorship.

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ERN-EurobloodNet Coordination team has been expanded with the incorporation of a clinical research manager and the new CPMS and e-Learning manager!

Rima Bayoud Benferhat is based in AP-HP Hôpital Saint Louis and Julia Zajac is based in Hôpital ERASME, welcome on board!

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ERN-EuroBloodNet new social networks! Follow us on Facebook and Linkedin!

In order to increase the outreach of network actions and results, we are glad to announce the release of two new ERN-EuroBloodNet communication channels through Facebook and Linkedin

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2020 Lymphoma Coalition Global Patient Survey on Lymphomas and Chronic Lymphocytic Leukaemia is now live!

ERN-EuroBloodNet is proud to collaborate with Europe Lymphoma Coalition on a Cutaneous Lymphoma comprehensive webinar program addressed to patients associations and patients advocates that will be tailored based on the results

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New search tool for ERNs on the Europa website!

Commission website (Europa) now hosts a searchable interface with details about ERNs for the public to search, including multi-lingual factsheets about ERNs and locations of members and partner centres.

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2020 Belgian meeting on Red Blood Cell disorders for scientists and patients will be held next 5th March!

Registration is open!

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Upcoming ERN-EuroBloodNet Thursdays Webinars - Register!

ERN-EuroBloodNet Thursdays webinars aims to promote interest on very innovative topics in order to stress among health professionals the cutting-edge advances in the field of Rare Hematological Diseases, mainly addressing very rare diseases, complex disorders, highly specialized procedures and implementation of guidelines.


Check the upcoming Thursdays Webinars (17:00 GMT+1) and register to receive the link! 

05/03/2020 Recommendations on Pyruvate Kinase Deficiency diagnosis - Paola Bianchi

19/03/2020 Challenges in the management of HFE-related hemochromatosis - Graça Porto

02/04/2020 Clinical management of rare forms of Hemochromatosis - Domenico Girelli

23/04/2020 Bone marrow failures genetic diagnostic - Regis Peffault de la Tour

14/05/2020 How approach older patient with Chronic Lymphocytic Leukemia - Dominique Bron

28/05/2020 Treatment of Cutaneous lymphomas - Martine Bagot

25/06/2020 Congenital Dyserythropoietic Anemia - Roberta Russo

09/07/2020 Treatment of anemia of low risk Myelodysplastic syndromes -  Uwe Platzbecker

17/09/2020 Genetic counselling of Hemophilia - Patricia Aguilar Martínez

24/09/2020 Hereditary Stomatocytosis - Immacolata Andolfo

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Hôpital St Louis / Université Paris 7
1 avenue Claude Vellefaux
PARIS, France

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