The Ultra Rare Diseases Disorders,Disabilities Foundation

The Ultra Rare Diseases Disorders,Disabilities Foundation

Charity information

The Ultra Rare Diseases Disorders,Disabilities Foundation

Our Charity was set up to help the families and children and patients with ultra rare diseases we want to open a home from home for the families and the patients to enable them to have rest bite care

Founded 2013

  • Mission statement

    Ultra Rare Diseases seem so far away the view is if its rare it won't affect me or us but the problem is it might that is why we are here to help the little children who it ha affected.

    We are here to give people hope and to give them support for when times become tough and you need a friend to talk to or be at the end of a phone line but because its an ultra rare disease you feel you can talk to know one as you feel as if you are on your own.

    We at The Ultra Rare Disease Disorders,& Disabilities Foundation is there to help and to give you support and friendship we are there to help with child care and we are there for support when times become tough for you and you feel alone we want to fill that gap for you and give you a place of refuge to come to when you are feeling low.

    We want to give the patient support also by having specially adapted rooms for you to play in these rooms will be special as they will be built to help your needs we want to put sensory equipment installed in all of them to help you pass away the long hours and to help you have some inner peace we hope we will have other children there who feel just the way you do.

    And for the brothers and sister's we want to have a coffee shop to enable them to meet with other children who are going through the same feeling as you are we hope to have a child psychologist on site to help you talk about the feelings you have and the fears that you cannot talk to your parents about it will be a place to meet

  • Aims

    The Ultra Rare Diseases Disorders,Disabilities Foundation aims to:

    • The Foundation would like to have its home from home project set up to help the families and the siblings and patients of the families with rare or ultra rare diseases
    • The Foundation wants to help families come to terms with what has happen to them and try to get them through the fear and the shock that comes with a member of the family being diagnosed with a rare
    • The Foundation can go along way in helping familes with a child with an ultra rare disease we know how these families feel as we are going through it our selve
  • Overview

    Established: April 2013

    Board members: 8

    Full time staff: 8

    Volunteers: 8

    Phone number: 02895439524

    Address: 86 Palmerston RoadSydenhamBelfast BT4 1QD