genonimics england study

[mary21]

Does anyone know much about this.
We have been invited to participate. DS aren't swans but have an inherited condition although we don't know about the inheritance pattern.

I'm in the 100,000 genomes project. is that what you mean?

I would like to know about that project as we have been asked too after being refused a nf1 blood test

What's an nf1 blood test?

Here's some info on the 100,000 genomes project. Access to the project is via your consultant.

www.genomicsengland.co.uk/the-100000-genomes-project/

We're also part of the 100K project with my son. Had bloods done 2 months ago so probably won't hear anything for a year we've been told.

We are on it. Had bloods done in February.

I doubt it will find anything though and we gave been told that. Dd is a Swan although I still believe it was to do with birth, no hcp will entertain that idea

We're joining this. Looking forward to finding out what's going to kill my child early

Our daughter has just been forwarded onto this programme. Hoping for some answers, but have been told it could take upto 2 years!
Her case had to be put forward by a multi disciplinary team at the tertiary hospital she attends. Has taken 8 years and 30 plus hospital admissions to get to this point

We've just had our blood tests for this study too.