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News, info, resources & informed opinion about Special Educational Needs, disability, mental health and children's health, especially rare conditions
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Author: Miriam Ingram
Home Articles posted by Miriam Ingram

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Author: Miriam Ingram

My role with SWAN UK involves raising awareness of our work and undiagnosed genetic conditions and I work closely with families to communicate their experiences as well as acting as the first point of contact for enquiries. I also enjoy organising events for SWAN UK families and managing SWAN UK’s social media accounts. I have a background in journalism, marketing and events and am passionate about giving people a voice and a platform to tell their stories.
Undiagnosed, but Dottie’s condition affects the whole family
Columnists, Rare Disease, Undiagnosed

Undiagnosed, but Dottie’s condition affects the whole family

By Miriam Ingram April 27, 2018 April 25, 2018

6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed. Having an undiagnosed …

Read more"Undiagnosed, but Dottie’s condition affects the whole family"
Tilly’s “tried on” lots of diagnoses, but none fit her mystery ultra-rare condition
Columnists, Rare Disease, special needs, Undiagnosed

Tilly’s “tried on” lots of diagnoses, but none fit her mystery ultra-rare condition

By Miriam Ingram April 28, 2017 April 26, 2017

Happy Undiagnosed Children’s Day! Did you know that around 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare …

Read more"Tilly’s “tried on” lots of diagnoses, but none fit her mystery ultra-rare condition"
My SWAN journey from denial to motivation with my undiagnosed son
Columnists, Guest Posts, Rare Disease, Undiagnosed

My SWAN journey from denial to motivation with my undiagnosed son

By Miriam Ingram April 29, 2016 April 27, 2016

Today is Undiagnosed Children’s Day, a nationwide event aimed at increasing awareness of SWAN or Syndromes Without A Name (also known as an undiagnosed genetic condition). Around 6,000 disabled children are born every …

Read more"My SWAN journey from denial to motivation with my undiagnosed son"
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