In this new series, our Communications Junior Manager, Rhiannon Walls, sits down for 10 minutes with rare disease experts to break down the complex issues concerning the rare disease community.
Live-streamed to LinkedIn each month, every episode will be dedicated to a different theme within the rare disease field. These discussions will delve into the most relevant topics of each policy area, clarifying their implications for you and your community, and offering suggestions on how you can get involved!
Join us live next month to be part of the conversation!
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Latest episode: ERNs
In this month’s episode of 10 Minutes With, host Rhiannon Walls speaks with Victoria Hedley of Newcastle University to explore the impact of the European Reference Networks (ERNs). Launched in 2017, these networks connect Europe’s top centres to advance rare disease care and research. Victoria sheds light on how ERNs enable virtual consultations and foster cross-border collaboration, before highlighting opportunities to further embed ERNs at national levels, ensuring equitable access to specialised care. Learn how ERNs are shaping the future of rare disease healthcare!
Access to Treatments
In this inaugral episode, Rhiannon is joined by Alexander Natz (EUCOPE – European Confederation of Pharmaceutical Entrepreneurs) and Simone Boselli (EURORDIS) to discuss how we can make rare disease treatments more available, affordable and accessible.
EU Action Plan
In May’s episode of 10 Minutes With, Host Rhiannon W. is joined by EURORDIS Public Affairs Director Valentina Bottarelli, to breakdown the topic of the EU Action Plan on Rare Diseases. What is an EU Action Plan? Where does the term come from? Why do we need it? And, what can I do about it? Find out about all this and more.
Young Advocates
In June’s episode of 10 Minutes With, Host Rhiannon W. talks to Adéla Odrihocká, an award winning rare disease and disability & inclusion advocate, about the highs and lows of her journey in the rare disease space so far.
Paralympian Sofie Skoubo
After giving the keynote speech at #ECRD2024, Sofie sat down with us to talk about how her rare disease journey started, how she first got involved in sport and the journey that has taken her from there to competing at #paris2024 for the Danish wheelchair rugby team!
Paralympian Sofie Skoubo, part 2
In the second part of our conversation with Paralympian and Researcher Sofie Skoubo, Sofie shares how she’s also trying to push the boundaries of classroom accessibility with her PhD research. She’s exploring how telepresence robots can make school attendance more accessible for children with rare diseases, ensuring they not only stay connected to their education but also experience the essential social interactions that school provides.
ERDERA
In this month’s episode of 10 Minutes With, Rhiannon Walls is joined by Roseline Favresse, EURORDIS' Research Policy and Initiatives Director, to discuss the groundbreaking European Rare Diseases Research Alliance (ERDERA).
Rare Parenting
In this month’s episode of 10 Minutes With, Rhiannon Walls is joined by Professor Lara Bloom, CNE, CEO of The Ehlers-Danlos Society, rare disease advocate, and new mother. Becoming a new parent is challenging at the best of times, but what does this look like when you’re living with a rare disease?Access to Treatments
In this inaugral episode, Rhiannon is joined by Alexander Natz (EUCOPE – European Confederation of Pharmaceutical Entrepreneurs) and Simone Boselli (EURORDIS) to discuss how we can make rare disease treatments more available, affordable and accessible.
EU Action Plan
In May’s episode of 10 Minutes With, Host Rhiannon W. is joined by EURORDIS Public Affairs Director Valentina Bottarelli, to breakdown the topic of the EU Action Plan on Rare Diseases. What is an EU Action Plan? Where does the term come from? Why do we need it? And, what can I do about it? Find out about all this and more.
Young Advocates
In June’s episode of 10 Minutes With, Host Rhiannon W. talks to Adéla Odrihocká, an award winning rare disease and disability & inclusion advocate, about the highs and lows of her journey in the rare disease space so far.
Paralympian Sofie Skoubo
After giving the keynote speech at #ECRD2024, Sofie sat down with us to talk about how her rare disease journey started, how she first got involved in sport and the journey that has taken her from there to competing at #paris2024 for the Danish wheelchair rugby team!Paralympian Sofie Skoubo, part 2
In the second part of our conversation with Paralympian and Researcher Sofie Skoubo, Sofie shares how she’s also trying to push the boundaries of classroom accessibility with her PhD research. She’s exploring how telepresence robots can make school attendance more accessible for children with rare diseases, ensuring they not only stay connected to their education but also experience the essential social interactions that school provides.ERDERA
In this month’s episode of 10 Minutes With, Rhiannon Walls is joined by Roseline Favresse, EURORDIS' Research Policy and Initiatives Director, to discuss the groundbreaking European Rare Diseases Research Alliance (ERDERA).