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Hi, my name is 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?
Replies
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.
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It's great to hear you started your charity but sad to hear about your concerns
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.
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