Venue Heyns Hall ,St Marks Church Holywood Road
11-00am to 2-00-pm
We are very pleased to say that Rare Disease Day Has found a venue at Heyns Hall St Marks Church Holywood Road East Belfast, we are pleased to say that to enable them to make contact with everyone with rare diseases and disabilty there is ample parking and wheel chair access, this event is a patient and family event for everyone with rare diseases and children and adults fighting cancer and disabilty.
This event is for a time to remember and to meet people with disabilty both seen and not seen, the sponsor for this event is The Cavan Tommy Hoey Trust named after a little boy who is fighting two rare diseases himself, his diseases are XLP and EBVHLH. The Trust has set this day in its calander to hold this event to coincide with the World Rare Diseases Day that takes place every single year in Europe, USA and other countries world wide.The Trust has recognized the need for patients, family members and carers to come together once a year to disscuss and talk about how they are coping and the comfort of knowing you are not alone living with a rare disease and a disabilty, we know just what is entailed in living with and looking after someone with a rare disease and with learning disabiltys.We hope to have various groups and speakers at this event but we have it timed that you will be able to talk and to meet with other groups and with other people that are attending, and know what you are going through. We invite our local MLAs, Councillors, Doctors, and Health Services to this event to enable them to meet and to listen to your side of living with and coping with a rare disease and disabilty. Rare Disease Day is your day, take ownership of it let it help to give you a voice that can be reckoned with the need for change in the thinking of Rare Diseases and Disabilty is not and the need is just The Cavan Tommy Hoey Trust wants inclusion for all and to stamp out exclusion
Regards
Catherine
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Catherine Flannigan
Information and Development Officer
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Contact a Family- NI Office
50 Railway Street
Lisburn
BT28 1XP
02892627552
catherine.flannigan@cafamily.org.uk
www.cafamily.org.uk/nireland
National Helpline 0808 808 3555
Helpline 0808 808 3555 (UK only) Open 9.30 am - 5pm Monday to Friday Textphone 0808 808 3556 Email: helpline@cafamily.org.uk
Textphone 0808 808 3556
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