The Thalassaemia International Federation (TIF) announces the establishment of TIF’s Patient Advocacy Group for Thalassaemia and Sickle Cell Disease (T-PAG) – a Community Advisory Board spanning across 62 countries globally!
Ensuring Meaningful & Productive Discussions with Patient Advocates:
The T-PAG is one of the two constituent parts of ‘TIF’s Patient Advocates Programme’, itself an extension of the TIF Expert Patients Programme established over 20 years ago by the Federation as an on-going effort to increase the knowledge, competencies and capacities of patients globally so they can have an active and meaningful participation in decision-making processes as equal partners with healthcare professionals and health authorities.
TIF endeavours to make every effort to ensure that participating Patient Advocates in the T-PAG receive appropriate and relevant Educational & Capacity Building opportunities for becoming an Expert Patient, mainly through participation in TIF’s Educational Programme, including Publications, Conferences, Workshops and most importantly the Thal e-Course (TIF’s online interactive disease-specific educational platform).
The main role of T-PAG members is to provide their opinion / perspective as patients, and participate in consultations by policymakers, industry, researchers or other stakeholders ensuring at all times that they are well versed and knowledgeable on the topic of discussion.
Wide Range of Patient Profiles – Origin, Diagnosis, Age and Gender:
Standing apart as an international initiative, the T-PAG works on three levels – Global, Regional and National – providing interested stakeholders access to a plethora of patient profiles depending on their needs.
The T-PAG is not only European based, as other thalassaemia and sickle cell disease related community advisory boards may be, thus providing the opportunity to learn from a wider pool of patient advocates, taking into account the multitude of issues and challenges that concern patients across the world.
Three-tier structure ensuring representativeness:
The T-PAG, is made up of 3 levels: National T-PAGs ; Regional T-PAGs and THE Global T-PAG.
Each National T-PAG is comprised of a number of patients (min. 1 – 2) from each country-member of TIF, who are equipped with a suitable level of knowledge to participate in discussions and provide the patients perspective on a number of topics to various stakeholders (e.g. policy-makers, international health bodies, industry etc), as and when required. The National T-PAGs then come together to form 6 Regional T-PAGs, electing a Regional Facilitator as a guide in their work. The Regional Facilitator from each of the 6 regions, together with the members of the TIF Expert Patient Core Group (which was brought together in 2009 with a mandate to develop patient education material) form the Global T-PAG.
It is noted that T-PAG members must fulfil specific eligibility criteria and each member is required to endorse specific Terms of Reference for participating in the T-PAG, renewable every 12 months, ensuring confidentiality in addition to outlining their Role and Responsibilities towards the T-PAG but also TIF towards each T-PAG member.
Experienced patient advocates at the helm:
Passionate patient advocates and leaders, with an experience of over 30 years in the field, Mr George Constantinou (UK) and Mr Riyad Elbard (Canada), both members of the TIF Board of Directors, currently lead the T-PAG as Global Facilitators.
Make Informed Decisions – Get the Patients Perspective:
Are you interested in hearing what knowledgeable patient advocates have to say?
Engage in a meaningful and productive discussion with well-versed thalassaemia and sickle cell disease patients by expressing your interest to us at firstname.lastname@example.org
A dedicated and customized T-PAG meeting can be organized, either face-to-face or virtually at a time and location of your choice, with the participant profiles (number, age, origin, diagnosis) that meet your particular needs.
Any collaboration will be governed by TIF’s Code of Ethics for working with Industry.