Rare Ireland

September 11, 2018

Outline the vision and mission of the Organisation
Rare was set up by two Mothers of children with Rare conditions. There was absolutely no support to parents post diagnosis and a 2 year wait to see a genetisist to explain your childs condition to you. In the meantime parents where left alone with the worry and uncertainty about their childs diagnosis. We bridge that gap and provise vital support to parents at such a tough time. We also provide days out, coffee mornings, therapies etc. We are parent led and have no funding. We are so passionate about Rare and the help we give to our mambers. We started off as two Mothers who had never met and we now help over 350 families.
How has the Organisation developed and tackled issues?
The two founding members had never met in person before Rare was set up. We spent countless hours on the phone and through emails etc. We both had a very strong passion and vision for what we both wanted. We set up Rare to support families of children living with rare life limitimg conditions. Some of our children wont live tto their adulthood. We are the first and only organisation specifically for parents of children with rare conditions in ireland. We have grown massively and put in so much hard work while raising our own Rare children.
What has the overall impact of the work been?
We started out as two parents who did not know each other but reached out to each other for support during a very difficult time. There was two of us when we started and now we help over 350 families. Often these children wont live to see their adulthood. Many have tumors that require chemo, are non verbal, severly disabled etc. We recieve so many messages thanking us for being there and supporting our members. We are very passionate about Rare and are very proud of how far weve come. We have nearly 2000 followers on our public page where we share our members stories and raise as much awareness as we can. We also provide friendship, support, coffee mrnomgs, play dates therapies and more.
What makes this Organisation unique?
We are the only Organisation in Ireland specifically for parents of children with Rare conditions. We have a database where we save details of our members conditions and that way if somwkne gets in touch and we have a member with same condition we can put them in touch with each other. Support is vital to our parents.
How can the public support this work?
We have a public page on facebook where we share all details of fundraising, activities we run, how to get in touch and we share our members stories to raise awareness of the differe t rare conditions we represent. The support we recieve is amazimng and rrally the success of Rare speaks for itself.
How is the Organisation transparent and accountable?
We comply with all rwlwvant standards and codws. We are 100% transparent and have our rules and regulations readily available We also have a very trustworthy commitee.

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