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Rare Disease Day 2019 – What Rare Means For Me

Today is Rare Disease Day 2019, celebrating people living with, and raising awareness of rare diseases.  There are between 6000 and 8000 rare diseases, with new ones being discovered on a regular basis and equally more and more already known…

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2018 – What A Year! & Looking Ahead to 2019

What a year 2018 has been. Such highs, such lows, but overall, it’s been an incredible year. I have had such fun, achieved a lot, received recognition for my work, been involved with even more work and projects, I’ve given…

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I Have A Mitochondrial Disease: Update On The Search For A Diagnosis

Thursday 15th November I had a neuromuscular follow up with my fantastic consultant Dr Ros Quinlivan at the National Hospital for Neurology and Neurosurgery. I've been seeing Dr Quinlivan after I was referred to the National Rare Mitochondrial Disease Service,…

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NHS Peer Leadership Academy: Day 6 – The Final Day

And so it is, the final day of the Autumn 2018 cohort of the NHS Peer Leadership Academy. This continues with my series in which you can read previous blogs sharing my PLA journey by clicking the hyperlinked text for…

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2018 Disability Power 100 List: Becoming One Of The Most Influential Disabled People in Britain

This week it was announced that I had been named as one of the 100 most influential disabled people in Britain, on the Shaw Trust Disability Power 100 List.  What is the Disability Power 100 List? The Shaw Trust Power…

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IHUG/ESNEFT User Group Celebration & Workshop; 12/10/18

Fantastic day today at the IHUG (Ipswich Hospital User Group) celebration at Ipswich Hospital today where I was giving a presentation and then supporting their workshop afterwards.   In my speech I talked about my work and achievements, how I…

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Hospice Care Week & #HatsOn4CPC

This week it’s Hospice Care Week. All of you know I am a palliative and hospice care advocate having been a beneficiary of such services since I was 17.  You all know my story, being born with health problems and…

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On Turning 25 (Tuesday 2nd October)

On Tuesday 2nd October it was my birthday; a birthday I was not expected to reach. I turned 25; which is at least 2 years longer than I was expected to reach. I’ve lived a quarter of a century! At…

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Receiving my Honorary Degree of Master of the University from the Open University – 21/09/18

On Friday 21st September 2018 I received a prestigious accolade: I was awarded an Honorary Degree of Master of the University from the Open University, for commitment to public services. What an incredible thing to receive, to be recognised in…

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Awareness Weeks, Months & Days in September

Well back to blogging but on my new website. I thought I’d do a post about a few awareness days/weeks/months that are current this month or fall this week. Sepsis Awareness Month  First off, September is Sepsis Awareness Month. I’ve…

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