Let’s get organised: Three major events!

Long Gallery Reception, 13 January 2014

Simon Hamilton MLA has very kindly agreed to host a reception for the Northern Ireland Rare Disease Partnership, in the Long Gallery, Parliament Buildings, Stormont, on January 13 from 11am to 1pm.
The aims of the reception are:

  • Raise awareness of Rare Diseases;
  • Publicise the “Living Every Day with a Rare Disease” Survey, which will be running through January and February;
  • Give an opportunity for organisations and individuals representing different rare conditions to showcase their information and explain what their condition involves; and
  • Publicise International Rare Disease Day (28 February) and the Joint North South event in Belfast

We need as much publicity and as big an attendance on the day as possible- it’s a unique opportunity to talk to MLA’s; to bring the realities of living with a rare disease to their attention; and to press for meaningful implementation of the new UK Rare Disease Strategy in Northern Ireland.

If you or your organisation wants to attend, please contact me (christine@nirdp.org.uk) as soon as possible – and by 20 December at the very latest!

International Rare Disease Day: 28 February 2014

Following last year’s very successful Joint North South Rare Disease Day event, held in Dublin City Hall, we are now planning for the second such event, to be held in Riddell Hall, Queen’s University, Belfast, on 28 February 2014.
The International Theme for the Day is “Joining Together for Better Care”, and we hope this second Joint North South Event will be both fun, and provide further impetus to the efforts to improve cross border co-operation in health issues. We hope that Ministers from Northern Ireland and the Republic will attend, and that the speakers and discussions will show how progress has been made since last year, in the development of Rare Disease Plans, and in taking forward the theme of “Joining Together for Better Care”.
There will be Poster Competitions, for both medical/scientific and technical issues; and for children to show how living with a rare disease affects them and their family; and during the lunch break, a chance to get to know others and to join in a variety of activities.
We need to get the word out across all our networks to make sure we have a good turnout from across every county; and make this a day to remember with pride; and we will need to have volunteers on hand before and during the event for such tasks as registration, talking to the press, managing the Poster Competitions, etc. So please pass the word around, and contact RDD2014@nirdp.org.uk for information or to volunteer!

Belfast DisabilityPride: 20 September 2014

DisabilityPride is coming to Belfast on 20th September 2014! There will be a carnival parading through the streets to the City Hall, where there will be a concert and retail village.
The overall mission of the Disability Pride Parade is:

  • To change the way people think about and define “disability”;
  • To break down and end the internalized shame among people with Disabilities; and
  • To promote the belief in society that Disability is a natural and beautiful part of human diversity in which people living with Disabilities can take pride.

DisabilityPride Belfast will be a fun filled day where we can meet old friends, make new friends and have a party right in the centre of Belfast.
The movement originally started in Chicago in 2003 and has been spreading around the world, now trip-ability.com have been asked to bring it to Belfast, the first and only city in the UK & Ireland to host the event.
Let’s get together and support this initiative! Register now at http://disabilitypride.co.uk/register/ for news, and to participate, and who knows – maybe we could even have an NIRDP Float….??