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 optimize Europe’s blood supply; reduce transfusion dependency and facilitate innovation.
Read the Blood & Beyond Statement on the SoHO Regulation (October 2022) HERE
Read the Blood & Beyond Joint Declaration (July 2022) HERE
Read the Blood & Beyond Policy Briefing on COVID-19 & Blood Use in Europe HERE
Read the Full Blood & Beyond Report HERE
Read the October 2021 Blood & Beyond Policy Event 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
This report describes the importance of systematically involving patients throughout a medicine’s life – from its early development through the regulatory process to ongoing monitoring and safe use in everyday healthcare.
It provides a comprehensive overview of the current knowledge about the benefits of patient involvement and existing initiatives, gives many examples and recommendations, and addresses the remaining challenges and practice gaps. The report will prompt readers to implement its best practice recommendations according to how well they fit in with their organisational and national needs.
The report combines the experience and expertise of the CIOMS Working Group XI on Patient involvement in the development, regulation and safe use of medicines.
Read the CIOMS Report HERE
The ‘National Strategy for Thalassaemia & Other Haemoglobinopathies’ marks a new era for the improvement of the provided medical, social, and other services to patients with thalassaemia in Cyprus, and aims to strengthen actions for the prevention and management of the disorder, promote thalassaemia-related research and innovation, and support the transition of the Nicosia Thalassaemia Center into an International Center of Excellence.
TIF is confident that the National Strategy will act as a reference point towards the better and more effective monitoring and management of Cypriot patients and will contribute the most to recognising Cyprus as a pioneer and role model for haemoglobinopathies worldwide.
Read the National Strategy for Thalassaemia & Other Haemoglobinopathies (GR)
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 fulfill 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 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.