Patient Perspectives on Gene Therapy for Sickle Cell Dise...

What this episode covers

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

Share this episode

Similar Episodes

Ep 1957 Office Hours Call Teachhoops.com

Jun 24, 2026 ·20m

Stop Alert Fatigue: Blumira's Approach to MSP Cybersecurity in 2026

Jun 23, 2026 ·28m

MSP Leadership Lessons from Nancy Henriquez – Head of Community at MSP Unplugged

Jun 23, 2026 ·31m

Ep 1956 Are Your Open Gyms Building Winners… or Just Filling Time?

Jun 23, 2026 ·10m

Ep 1955. Teachhoops.com Member Call

Jun 22, 2026 ·20m

Basta de Mentiras: El TIMO de los Nits y el nuevo bombazo de SONY

Jun 19, 2026 ·70m

Similar Podcasts

The Power and The Punchline Unplugged Studios *THE POWER AND THE PUNCHLINE*Hosted by *Mick Hunt* and *Rudy Rush*Two worlds. One mission. Power and perspective meet comedy and culture.Mick Hunt, the modern voice of self-improvement and purpose, joins forces with Rudy Rush, nationally recognized comedian, TV host, and one of the sharpest talents in the industry. Together, they deliver a show that proves growth does not have to be serious, and laughter does not mean you are not learning.Each episode dives into honest conversations about life, culture, purpose, relationships, success, and the BECAUSE that keeps us moving. The power comes from the truth. The punchline makes it unforgettable.If you want conversations that make you think, laugh, and grow at the same time, this is your space.*Because sometimes the best lessons come with a laugh.* Ignition Zone Ignite to Rise Life Coaching Hey, I see you. You’re running a business, handling all the things, and somehow, you’re still answering emails at 10 PM.You tell yourself, ”Just one more thing,” but somehow, one more thing turns into one more hour.Sound familiar?Welcome to ”Ignition Zone,” the podcast for high-achieving women who are ready to set boundaries, unplug, and still keep their business thriving.I’m Crystal Cornacchia, The Unplugged Success Coach, and I help women like you reclaim your time without feeling guilty or losing momentum.Each week, I’ll give you quick, no-fluff episodes packed with simple strategies to:✔ Stop overworking and take back your time✔ Set boundaries that actually stick✔ Unplug without your business falling apart✔ Grow your business without being on call 24/7This is for you if you want to step back without stepping away and finally build a business that doesn’t need you every second of the day.New episodes drop every Tuesday on Spotify, Apple Podcasts, and igniteinnovation.net. 10-Minute Meditation Music with Piano | Unwind & Unplugged Asian Serenity Ten minutes of gentle piano flow — like a stream through a quiet forest.Layered with soft ambient textures, this piece guides you into deeper presence, ideal for mindfulness, journaling, or releasing tension after a long day. Mike Murphy Unplugged Mike Murphy Mike Murphy Unplugged is a podcast for one-man bands and content creators who want to move forward in business and in life. Learn how to start a podcast, how to create online content for a living, and how to create the life you want.

Frequently Asked Questions

How long is this episode of EHA Unplugged?

This episode is 27 minutes long.

When was this EHA Unplugged episode published?

This episode was published on March 14, 2025.

What is this episode about?

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...

Can I download this EHA Unplugged episode?

Yes, you can download this episode by clicking the download button on the episode player, or subscribe to the podcast in your preferred podcast app for automatic downloads.