Recent Posts

Blog, Patient Advocacy, RareDiseases, DravetSyndrome, Chapter 1
Raising awareness of Dravet Syndrome
Posted 23rd June 2021

Raising awareness of Dravet Syndrome

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Blog , Patient Advocacy , RareDiseases , NorrieDisease , Chapter 1
Our story of Norrie Disease
Posted 18th June 2021

Our story of Norrie Disease

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Blog , Patient Advocacy , RareDiseases , Schinzel-Giedion Syndrome , Chapter 1
How Schinzel-Giedion Syndrome (SGS) has changed our lives
Posted 28th May 2021

How Schinzel-Giedion Syndrome (SGS) has changed our lives

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Blog , Patient Advocacy , epilepsy , RareDiseases , Chapter 8
Dr Charles Steward joins as “friend” of the UK Infantile Spasms Trust
Posted 21st May 2021

Dr Charles Steward joins as “friend” of the UK Infantile Spasms Trust

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Blog , Patient Advocacy , Champ1 , RareDiseases
Our CHAMP1 journey
Posted 14th May 2021

Our CHAMP1 journey

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Blog , Patient Advocacy , RareDiseases , DravetSyndrome , Chapter 1
Raising awareness of Dravet Syndrome
Posted 23rd June 2021

Raising awareness of Dravet Syndrome

Read More
Blog , Patient Advocacy , RareDiseases , NorrieDisease , Chapter 1
Our story of Norrie Disease
Posted June Jun 18th 2021

Our story of Norrie Disease

Read More
Blog , Patient Advocacy , RareDiseases , Schinzel-Giedion Syndrome , Chapter 1
How Schinzel-Giedion Syndrome (SGS) has changed our lives
Posted May May 28th 2021

How Schinzel-Giedion Syndrome (SGS) has changed our lives

Read More
Blog , Patient Advocacy , epilepsy , RareDiseases , Chapter 8
Dr Charles Steward joins as “friend” of the UK Infantile Spasms Trust
Posted May May 21st 2021

Dr Charles Steward joins as “friend” of the UK Infantile Spasms Trust

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Blog , Patient Advocacy , Champ1 , RareDiseases
Our CHAMP1 journey
Posted May May 14th 2021

Our CHAMP1 journey

Read More
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