Hi, my name is urddadfoundation

urddadfoundation

Hi my name is Terry (Removed by moderator, full name) I am CEO/Founder of The Ultra Rare Disease Disorders And Disabilities Foundation our Charity is from Belfast Northern Ireland we  are a registered charity in Northern Ireland we are concerned about children with rare diseases who have round the clock and most of the care falls on the parents what will happen these children when they become adults and who will care for them?

Ross_Scope

Hello @urddadfoundation

Welcome to the community, how are you? 

It sounds like you do some marvellous work, that certainly is a very important issue to campaign about.

chiarieds

Hi @urddadfoundation - & welcome to the community. Parents who care so much for their children will be rightly concerned about their children's' future. This sounds like something much needed, so it's great you founded this charity.

woodbine

@urddadfoundation could I ask what your charity registration details are?

Cher_Scope

Hello @urddadfoundation and welcome to Scope's online community.

It's great to hear you started your charity but sad to hear about your concerns   Our informal carers are too often taken for granted with little state support, be it practical or financial.

In-fact, you might find this recent post about one dad's care for his daughter relatable.

How is the charity getting on?  Have you managed to garner much support/attention?  

All the best for the future and it will be nice to speak to you again.  Take care.

urddadfoundation

I would like to thank everyone who took the time to leave a comment for us The Ultra Rare Disease Disorders And Disabilities Foundation (urddadfoundation) is a charity based in Northern Ireland next year we will be starting to raise funds for a Northern Ireland Hub to help patients and there siblings and their families deal with a diagnosis of a rare or an ultra rare disease our Hub will be a place that families will be able to access help and support it will be there to give much needed help to families who have a child with a rare or an ultra rare disease