Additional Resources

Compiled external resources with additional information on health and haemoglobin disorders-related issues.

      

 

‘Blood & Beyond’ is a multi-stakeholder initiative developed by Celgene, now part of Bristol Myers Squibb, involving experts from the fields of Haematology and Blood Management, Nursing, Patient Advocacy, and Health Economics.

The ‘Blood and Beyond Report’ proposes a shared vision for rethinking blood use in Europe to improve outcomes for patients. Drawing on the input of various experts, it contains policy recommendations to safeguard and optimise Europe’s blood supply; to reduce transfusion dependency and to facilitate innovation.

Read the Blood & Beyond Policy Briefing on COVID-19 & Blood Use in Europe HERE

Read the full Blood & Beyond Report HERE

View the Blood & Beyond Infographic HERE

Read the Article ”Revisiting The Use & Management of Blood in Europe, in Times of Crisis & Beyond” HERE

Watch Androulla Eleftheriou´s Presentation on Blood & Beyond (2020 PanHellenic Congress on Economics & Health Policy) HERE (GR)

Watch Elena Mylona’s Video Interview on the Burden of Blood Transfusion HERE

thegenehome.eu is developed by bluebird bio and aims to provide comprehensive and understandable education about gene therapy for patients, caregivers, those wanting to learn more about gene therapy, and healthcare professionals. thegenehome.eu describes what it means to have a genetic disease and how the different types of gene therapies available can be used to treat genetic disease.

Visit the page HERE

The European Medicines Agency (EMA) has endorsed two statements for healthcare professionals and the general public about the importance, safety and effectiveness of vaccines published by the International Coalition of Medicines Regulatory Authorities (ICMRA).

International regulators from different countries and regions have come together and jointly developed these statements to reassure healthcare professionals and the public around the globe that medicines regulatory authorities only allow vaccines onto the market that fulfil the highest standards for safety, efficacy and quality.

In these statements, they also reiterate that it is everyone’s responsibility to get vaccinated in order to protect not only themselves but also their families, friends, communities, vulnerable populations who cannot get immunised as well as the generations to come.

Read the ICMRA Vaccine Confidence Statement for the General Public HERE

Read the ICMRA Vaccine Confidence Statement for HCPs HERE  

 

 

 

 

 

Sangamo Therapeutics creates genomic cures for patients suffering from severe diseases, including β-thalassaemia and sickle cell disease (SCD), for which today’s medicine can only offer symptom management at best.

The company has developed a series of useful resources for patients and families to help them learn more about new discoveries in genomic medicine, clinical trials, etc.

Read the Leaflet ‘Understanding Genome Engineering – A Focus on Genome Editing’ EN/ ESP

Read the Leaflet ‘Understanding Genome Engineering – A Focus on Genome Regulation’ EN/ ESP

Read the Leaflet ‘ Understanding the Importance of Shared Decisions’ EN

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