Thalassaemia Patients Connect
The Thalassaemia Patients Connect project, launched by the Thalassaemia International Federation (TIF), sets out to provide a shared communication space, giving individual patients and patient associations worldwide the opportunity to interact, ask for and share information with each other regarding thalassaemia.
The communication space includes a discussion board (forum), a Facebook page, a WhatsApp chat group, a YouTube channel and a Twitter, all under the name of Thalassaemia Patients Connect.
Exceptional patient personalities with national and international experience moderate the discussion on all channels. The members of the Expert Patient Call Group all live in countries around Europe and America, applying TIF policies. They are thus able to provide reliable information in regards to formal positions. The TIF team has also contacted medical advisors who have agreed to share their expertise with the TPC community, providing reliable knowledge and expertise to those who need it. Administrators and moderators are responsible for directing questions and requests for medical advice to the team’s medical advisors.
More about the platform
The Discussion Board (Forum) is freely available to all patients and association representatives who wish to join the discussions. Longer and consistent discussions on topics of concern to thalassaemia patients.
Visit the Forum“How is treatment over there?” “Do patients really benefit from the conferences they attend?Do it have an impact on us?” Real time question and answer from patients to patients.
Join the WhatsApp groupMaintain communication and stay up to date with thalassaemia status across the world! Ask questions, view patients’ news, comment and hear from fellow patients from around the globe.
Follow us on FacebookA Facebook closed group, exclusively run by veteran thalassaemia patients to discuss sensitive issues easily and in confidence. Learn and stay up to date with latest developments as felt by the patients themselves.
Join our Facebook Group