Surrey Mum: "Sharing of data is the future for rare disease"
A Surrey mum who lost her daughter to a rare disease, has told us she is excited about a new initiative which would see researchers have access to data from different hospitals on youngsters living with a rare disease.
Children with rare diseases could be set to benefit from better research and better treatment following a new initiative that would see researchers be able to access data from different hospitals on youngsters living with a rare disease.
The initiative has been brought forward by KidsRare with the new platform being developed by Great Ormond Street Hospital (Gosh) and LifeArc in collaboration with the Children's Hospital Alliance (CHA).
It is hoped that organising information in this way will lead to more breakthroughs when it comes to diagnosing and treating rare conditions, which are estimated to affect more than three million people in the UK.
Liz Curtis is a mum from Surrey who founded the charity The Lily Foundation after losing her daughter Lily to mitochondrial disease, a rare condition.
She told us she is very excited about the new initiative
"I think collaboration, data sharing, sharing of knowledge is the future for rare disease. So I think it's a really exciting piece of news that's come out today. Massive thumbs up to LifeArc and Gosh (Great Ormond Street Hospital) for working together to make this happen."
Liz added that a key part of what her charity is aiming to achieve, is there for to be a nationwide database on Mitochondrial disease, something which does not exist yet
She told us what kind of difference this would have made in her life if it were to exist at the time of Lily's diagnosis.
"If there had been something like that for us, it might have led to a much quicker diagnosis.
We knew Lily had a mitochondrial disease, but we didn't have a genetic diagnosis for her. And that impacted our future in terms of more children and things like that. So it could have had a big impact on our life."
Another key goal for the Lily Foundation is raising awareness for rare conditions, in particular mitochondrial disease.
Liz explains to us why this is so important
"If more professionals knew it could mean we would see an increase in diagnosis or at least looking down that pathway but also awareness brings funding, and funding brings research, and research brings treatment.
So it's it's all about bringing it to the forefront, rare disease in general, not just mitochondrial diseases. Rare disease individually are rare, collectively they are not."