Nurse says she was kicked off Southwest flight for genetic disorder Wednesday, 7 August, 2024 Independent
I noticed a strange change in my son’s eye when he was a baby – it turned out to be the sign of a rare disease Sunday, 30 June, 2024 Daily Mail
HIV drugs ritonavir and lopinavir trialled in people with neurofibromatosis 2 brain tumours Friday, 21 June, 2024 Sky News
Heartbreaking reason why ‘Elephant Man’ with biggest ever facial tumour had to leave school Monday, 6 May, 2024 LADbible
‘LIFE CHANGING’ Watch Charmaine’s transformation as doctors remove thousands of ‘bubble tumours’ that engulfed her body Thursday, 18 April, 2024 The Sun
Mom with ‘one-of-a-kind’ condition can finally see her own face again after more than 60 hours of surgery Saturday, 6 April, 2024 Unilad
‘The House of Extraordinary People’ Cast Member Responds to Criticism – The Mighty Wednesday, 17 January, 2024 The Mighty
Thomas Young went from not knowing why he couldn’t ride a bike to Paralympic gold and MBE – Daily Star Wednesday, 21 September, 2022 Daily Star
Family warn parents to look out for ‘obvious spots’ after boy, 5, diagnosed with brain tumour – Nottinghamshire Live Monday, 5 September, 2022 Nottingham Post
Adam Pearson: does Celebrity MasterChef contestant have a wife, what is neurofibromatosis – who is his twin? – NationalWorld Wednesday, 31 August, 2022 National World
Celebrity MasterChef 2022 contestant Adam Pearson’s condition and the childhood symptoms – Leicestershire Live Tuesday, 9 August, 2022 Leicestershire Live
First look! Sebastian Stan portrays man with neurofibromatosis type I with dramatic prosthetics – Daily Mail Wednesday, 27 July, 2022 Daily Mail
I lost my eyeball to a rare illness, now I’m a comedy sensation on TikTok – New York Post Friday, 10 June, 2022 New York Post
Symptoms and signs of neurofibromatosis by Australian mum who noticed strange detail in son’s reflection – Verve times Wednesday, 16 February, 2022 Verve Times
Changing Faces urge James Bond franchise to stop facial disfigurements for villians – Herald Scotland Tuesday, 28 September, 2021 The Herald
Scientists inch closer to developing blood test for certain nerve cancers – Philly Voice Friday, 3 September, 2021 Philly Voice
Dad’s pride as inspirational teen son with challenging health conditions wins award for his courage – Lincolnshire Live Friday, 6 August, 2021 Lincolnshire Live
Koselugo: The First Non-Surgical Alternative for Rare Plexiform Neurofibroma – BioSpace Wednesday, 21 July, 2021 BioSpace
Brooklyn Photographer Brings Attention to NF, the “Invisible Disease” – Brooklyn Reader Friday, 25 June, 2021 BK Reader
Nurse says she was kicked off Southwest flight for genetic disorder Wednesday, 7 August, 2024 Independent
I noticed a strange change in my son’s eye when he was a baby – it turned out to be the sign of a rare disease Sunday, 30 June, 2024 Daily Mail
HIV drugs ritonavir and lopinavir trialled in people with neurofibromatosis 2 brain tumours Friday, 21 June, 2024 Sky News
