Patient Perspectives on Gene Therapy for Sickle Cell Disease and B-Thalassemia

Join us for an insightful interview with patient advocates Miriam Santos Freire (sickle cell disease) and Loris Brunetta (beta-thalassemia major). Benefit from their experiences as they discuss with our host Isabel Olivera-Martinez the promises and challenges of gene therapy for these conditions.Listen to their experiences of living with these genetic conditions while they highlight the disparities in treatment access between wealthy and low-income countries. Both view gene therapy as a breakthrough that has the potential to cure these diseases, but express caution regarding its current limitations and complications. Tune in for their valuable insights and recommendations for advancing SCD and thalassemia management.Host: Isabel Olivera-Martinez, PhD, Medical Writer Guests:Miriam Santos Freire, Patient representative for EuroBloodNetPatient Advocacy & Communication for Sickle Cell (Portugal & UK) at European Sickle Cell Federation (ESCF)European Hematology Association (EHA)ERN-EuroBloodNetAssociação Portuguesa de Pais de Doentes com Hemoglobinopatias (APPDH) – also a Board MemberLoris BrunettaBoard Member of Thalassaemia International Federation (TIF), Vice-chair of EHA Patients’ Advocacy Committee (PAC), Member of the Patients and Consumer Working Party (PCWP) at EMA, EMA expert on ESEC, Former member of Committee for Orphan Medicinal Products (COMP) at EMA, ePAG at EuroBloodNet, Coordinator of the Italian Associations Advocacy Council (IAAC) President of Associazione Ligure Thalassemici (Italy).Learn MoreWhat did you think of this podcast? Share your opinions with us in this short feedback survey.https://forms.monday.com/forms/d02e52896815eef59ecae09fb74dd78f?r=use1Would you like to explore more eLearning or podcasts? Please visit the EHA Campus.https://ehaedu.org/CampusSubscribe, share, and review this podcast to be able to address topics you enjoy and like to listen to.Follow EHA on Instagram: https://www.instagram.com/EHA_Hematology/Facebook: https://e-h-a.link/facebookLinkedIn: https://www.linkedin.com/company/eha/Email us: [email protected] to receive the EHA Educational Updates via https://eha.news/subscribe 

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