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Rare Disease Day: 28th February 2022

Published Online: February 25th 2022
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Here at Touch Medical Media, we are supporting Rare Disease Day (28 February 2022) to shine a light on the experiences of people living with rare diseases, to improve awareness, encourage early diagnosis and tailored care.

We interviewed leading experts covering a wide range of rare diseases:

Prof. Jackie Palace Improving diagnosis and treatment of neuromyelitis optica spectrum disorder

Dr Richard Keen Rare bone diseases – Diagnosis, management and patient quality of life

Dr Spero R Cataland Acquired/immune TTP – Risks, complications and the impact on daily life

Prof. Said Beydoun Understanding myasthenia gravis and the impact on patients’ quality of life

Prof. Damara Ortiz The impact of Pompe disease and the importance of newborn screening

 

Along with content from leading experts in the field, we were honoured to speak with people living with rare diseases:

Ethan Crough Living with achondroplasia – Celebrating diversity and increasing awareness

Megan Hunter Living with myasthenia gravis – A journey to diagnosis

Shekita Green Living with neuromyelitis optica spectrum disorder – A patient’s perspective

 

We hope that these conversations can continue to help support the community, increase awareness and improve understanding.

 

Learn more about our other Thought Leadership campaigns: World Aids Day  and World Menopause Day. Please don’t hesitate to get in touch if you want to learn more about the Awareness Days we will be supporting in 2022.

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