When Awareness Fails: A story of Hope

When Awareness Fails: A story of Hope.


About jigsawtree

Hi my name is Terence Hoey I am CEO of The Ultra Rare Disease Disorders & Disabilities Foundation LTD a non for profit charity our address is Palmerston Road Sydenham Belfast Co Antrim Northern Ireland BT41QD

Posted on May 28, 2015, in Uncategorized. Bookmark the permalink. 1 Comment.

  1. Thank you so much for being you a person who cares enough to put up Blogs about how you are I am so glad to have you on our site because that is what it is there for and I am so glad to have read your blog I really hope it will not be the last time we need people like you who want to help make a difference I am doing this for all the little children out there who have not got a voice we want to be their voice for them.

    Rare Disease needs to have its profile lifted and I want to help in any way I can, Patients like you are the real cheerleaders they can help others by telling your story and reminding people that hey we are here and we matter we want our lives back we want to be heard we want treatment like everyone else we don’t want rare disease we want to live our lives We need people like you to make them understand what it’s like for you

    Please return to our blog and use it like it is yours thanks for your help in the fight against rare disease

    Terence Hoey


%d bloggers like this: