GAUK Rare Disease columns

The high costs of living with a disability, especially if it’s rare
I don’t need to tell regular readers of this blog that dealing with the symptoms of the condition that affects…
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Who’s using your family’s health data and how secure is it?
Beth McCleverty is the columnist today from Genetic Alliance UK Data, from many angles, has been somewhere near the top…
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Rare Disease Day: Hear our voice to help meet our needs
Monday 29th February 2016 is quite aptly named Rare Disease Day - as a leap year it's the rarest day…
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The Rare Reality: An insight into the patient and family experience of living with a rare disease
Specialised help and services for children and adults with rare or undiagnosed conditions has always been hard to find -…
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Author: Tania Tirraoro

Founder of Special Needs Jungle. (She/Her) Parent of two young adults with autism. New grandma. Tania, who is autistic, is a leading SEND advisor, working with the Special Education Consortium, Ofsted, and Whole School SEND. She is also an Advisory Board member of the Royal Holloway, University of London Centre of Gene and Cell Therapy and an Editorial Board member of Springer Nature Gene Therapy journal. Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media. Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

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Author: Tania Tirraoro