Recent Posts

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 , genomics , SCN8A , Chapter 1
SCN8A – the needle in the haystack 
Posted 30th April 2021

SCN8A – the needle in the haystack 

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Blog , Patient Advocacy , epilepsy , genomics , Ring20 , Chapter 1
Redressing the balance: Ring Chromosome 20 Syndrome
Posted 16th April 2021

Redressing the balance: Ring Chromosome 20 Syndrome

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Blog , Patient Advocacy , epilepsy , Chapter 1
Why my five-year-old daughter is my inspiration as we fight to understand her sister’s epilepsy
Posted 26th March 2021

Why my five-year-old daughter is my inspiration as we fight to understand her sister’s epilepsy

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Patient Advocacy , Chapter 1
Charles’ Story
Posted 4th December 2020

Charles’ Story

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Patient Advocacy , Chapter 8 , Chapter 7 , Chapter 1 , Chapter 2
The complexity of epilepsy - an overview
Posted 1st December 2020

The complexity of epilepsy - an overview

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Blog , Patient Advocacy , Chapter 1 , Chapter 2
Why I believe in clinical genomics: A parent’s perspective
Posted 21st September 2016

Why I believe in clinical genomics: A parent’s perspective

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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 , genomics , SCN8A , Chapter 1
SCN8A – the needle in the haystack 
Posted April Apr 30th 2021

SCN8A – the needle in the haystack 

Read More
Blog , Patient Advocacy , epilepsy , genomics , Ring20 , Chapter 1
Redressing the balance: Ring Chromosome 20 Syndrome
Posted April Apr 16th 2021

Redressing the balance: Ring Chromosome 20 Syndrome

Read More
Blog , Patient Advocacy , epilepsy , Chapter 1
Why my five-year-old daughter is my inspiration as we fight to understand her sister’s epilepsy
Posted March Mar 26th 2021

Why my five-year-old daughter is my inspiration as we fight to understand her sister’s epilepsy

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Patient Advocacy , Chapter 1
Charles’ Story
Posted December Dec 4th 2020

Charles’ Story

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Patient Advocacy , Chapter 8 , Chapter 7 , Chapter 1 , Chapter 2
The complexity of epilepsy - an overview
Posted December Dec 1st 2020

The complexity of epilepsy - an overview

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Blog , Patient Advocacy , Chapter 1 , Chapter 2
Why I believe in clinical genomics: A parent’s perspective
Posted September Sep 21st 2016

Why I believe in clinical genomics: A parent’s perspective

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