The Thalassaemia International Federation has taken the lead to support patients with sickle cell disease (SCD) through the establishment of the International Active SCD Group (IASG) – an informal network of patient-led organisations working in the field of SCD, that advocates for the rights of patients with SCD in a consistent way, and ensure swift and timely access to the new innovative therapies that are currently being developed.
About the IASG
The IASG is an informal network of patient-led organisations working in the field of SCD, that advocates for the rights of patients with SCD in a consistent way, and ensure swift and timely access to the new innovative therapies that are currently being developed. Established in 2019, it has marked the intensification of efforts on behalf of the Federation towards the concerted empowerment of SCD patients globally.
OBJECTIVES: The IASG shall strengthen the voice of SCD patients across the world and enable their active and meaningful participation at the relevant decision-making bodies at the national, European and international levels such as Ministries of Health, European Commission, European Parliament, European Medicines Agency, World Health Organization and the industry.
The participation of patients, through a specific SCD Advocacy Group, as equal and productive partners of healthcare professionals and decision-makers will contribute to the development of new policies and/or decisions regarding the new, ground-breaking drugs that are currently in the research pipeline for the treatment and cure of SCD.
ROLE OF TIF: Since its founding in 1986, TIF has accumulated vast experience in the provision of both expert technical services for the development of national control programmes for thalassaemia (including prevention and treatment) as well as establishing an international renowned Capacity Building Educational Programme, consisting of:
(b) publications (for patients/parents, healthcare professionals and the wider community),
(c) short-term academic courses for healthcare professionals, and more recently
(d) an electronic Academy for both patients/parents and healthcare professionals.
The material developed and delivered across TIF’s Educational Programme is of the highest calibre, designed and compiled by international experts in the field with the contribution of educational scientists and educators. Thus, TIF will provide support, guidance and advice to the IASG on these matters to achieve the maximum level of success.
Utilizing TIF’s robust infrastructure, the IASG SECRETARIAT will be undertaken by TIF in order to reliably ensure the maintenance of the community’s momentum and most importantly to provide quality, state-of-art, evidence-based actions.
The IASG held its first, inaugural meeting in June 2019 in Athens, Greece and a second ratification meeting in October 2019 in Hamburg (Germany). These face-to-face meetings have been pivotal in ensuring the exchange of knowledge and experiences between the founding members (also members of the Executive Committee), as well as providing excellent ground to reflect on actions taken and to plan the next steps.
Seeking to make this an annual tradition, in 2021 TIF organises the 1st Global Annual IASG Meeting, on October 22. This Meeting, to be held in a virtual environment on account of the ongoing COVID-19 pandemic, will be participated by current and potential members of the IASG from around the world.