NF Podcast
Living with NF means dealing with complicated questions, endless medical terms, and information that often feels impossible to understand. NF Podcast breaks down complex NF topics into clear, accessible conversations — from medical updates and research news to patient advocacy and real-life experiences across all types of Neurofibromatosis. No unnecessary jargon. No overwhelming explanations. Just trustworthy information for patients, caregivers, and families who want to better understand NF and stay connected to what matters.
Gene therapy explained (by Dr Ignacio Blanco) Part Two
What support do families really need after an NF diagnosis? In part two of our conversation with Ignacio Blanco, we discuss the challenges that follow a diagnosis including genetic counselling, helping parents navigate difficult conversations with their children, and the transition from paediatric to adult care.
We also explore why patient organisations play such an important role, how quality of life is reshaping NF research, and what exciting developments lie ahead.
This episode was funded by Alexion – AstraZeneca Rare Disease (https://alexion.com)). The rough cut was completed by Erik Artner-Bideh. Post-production was handled by Al...
Gene therapy explained (by Dr Ignacio Blanco) Part One
Have you ever wondered why NF can affect people so differently even within the same family?
In part one of episode two, we speak with Ignacio Blanco about genetic testing, the history of NF, and why early diagnosis can make a major difference for patients and families.
We also discuss why NF can manifest so differently across generations, how that affects treatment decisions, and why understanding the genetic background of NF remains such an important part of research and care.
This episode was funded by Alexion – AstraZeneca Rare Disease (https://alexion.com)). The ro...
Why Mental Health Matters in NF
Living with NF affects more than just physical health. And the conversation around mental health is finally starting to catch up.
In the first episode of NF Podcast, we speak with Matt Boltz Johnson about mental health advocacy, patient journeys, and the growing recognition of quality of life in the rare disease space.
Through his work with EURORDIS (https://www.eurordis.org/mental-wellbeing/)) and the European Reference Networks (ERNs), Matt identified a major gap: mental health challenges were consistently part of patient experiences, but there was little support or advocacy around them. We talk about...
