A vital tool for understanding and claiming the rights of individuals living with Thalassaemia and Sickle Cell Disease (SCD).
The Thalassaemia International Federation (TIF) is delighted to announce the publication of the 2nd edition of its guide “Know Your Rights: A Guide for People Living with Thalassaemia and Sickle Cell Disease (SCD)”, an essential empowerment resource for individuals affected by these lifelong, complex, and inherited haematological conditions, as well as for their caregivers and families.
This newly revised and enriched edition aims to inform and support every patient with haemoglobin disorders by providing comprehensive information on their fundamental rights in the domains of health care, social support, and quality of life.
As noted by Dr. Androulla Eleftheriou, Executive Director of TIF and one of the authors of the guide:
Awareness of patients’ rights is the first and most crucial step toward demanding better care, dignity, and social inclusion. Access to healthcare, informed consent based on full disclosure, quality treatment, and social support – these are not negotiable privileges but established human rights.
The guide is grounded in international legal and ethical frameworks, such as the Charter of Fundamental Rights of the European Union, the Amsterdam Declaration on the Rights of Patients (WHO), the Oviedo Convention (Council of Europe), and other significant European and international legal and policy instruments. Furthermore, it incorporates the invaluable lived experience and collective voice of the global patient community with Thalassaemia and SCD, as expressed through the TIF Board of Directors and its network of 242 patient organisations across 67 countries.
The authors of this publication are Dr. Androulla Eleftheriou and Ms. Katia Pelides, TIF’s Senior Educational Programmes Officer, while the scientific editing and content review were undertaken by Dr. Michael Angastiniotis, TIF Medical Advisor, who has longstanding expertise in the field of rare diseases and health policy development.
TIF extends an open invitation to every patient, parent, or caregiver to download and study the guide thoroughly. Empowerment begins with knowledge – and meaningful change stems from collective and well-informed advocacy.
