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.
