Additional Resources
Compiled external resources with additional information from leading organisations on health and haemoglobin disorders-related topics.
‘Blood and Beyond’ is a multi-stakeholder initiative developed by Celgene, now part of Bristol Myers Squibb (BMS), involving experts from the fields of Haematology and Blood Management, Nursing, Patient Advocacy, and Health Economics.
Blood and Beyond’s overarching goal is to advocate for and help advance policies and practices that improve patient outcomes by supporting patient-centricity in anaemia prevention, diagnosis, and management thought patient blood management (PBM) and innovation.
Report of the 2025 B&B Policy event in the European Parliament HERE
Read the 5-Point Plan for Better Blood Health in Europe HERE
View the Roadmap ”Towards Better Blood Health in Europe” HERE
Read the Blood and Beyond Statement on the SoHO Regulation HERE
View the Blood and Beyond Infographic HERE
The International Society of Blood Transfusion (ISBT) is a global organization where transfusion medicine professionals from over 100 countries collaborate to enhance the safety of blood transfusion worldwide. ISBT promotes standardization and harmonization in the field of blood transfusion.
The Society provides a wide array of educational resources, such as guidelines, tools, publications, e-learning materials, and external links.
Visit the official ISBT page 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.
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
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 European Medicines Agency (EMA) has endorsed two statements for healthcare professionals and the general publicabout 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
The Coalition for Reducing Bureaucracy in Clinical Trials has released updated recommendations aimed at streamlining clinical research processes across Europe. These guidelines focus on reducing administrative burdens, enhancing patient safety, and ensuring the quality of clinical trials.
Key Recommendations:
Simplification of Administrative Procedures: Streamlining documentation and approval processes to reduce delays.
Patient-Centered Approaches: Designing trials that prioritize patient safety and experience.
Harmonization Across Member States: Aligning regulatory requirements to facilitate multi-country trials.
These recommendations aim to make clinical trials more efficient and patient-friendly, ultimately advancing medical research and treatment development.