Rare Disease Day!

Rare Disease Day takes place on the last day of February each year (29th February itself being a rare day). Rare Disease Day is about raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

We know that it’s not that rare to have a rare disease, but that’s not how it feels when you and your family experience that odd illness that nobody knows much, if anything, about. We know how important it is to come together and share experiences, to learn from each other and to amplify each other’s voices. We know the importance of working together to make change happen.

Today, NIRDP are holding events, hosted by the Mayor of Ards and North Down Council, and the Mayor of Derry City and Strabane Council. Many thanks to them for their help and hospitality. On Monday we host the 4th Joint North South Conference on Rare Disease at Riddel Hall, Belfast. We are all busy, and delighted to be so.

We hope you can join us- at an event, on Facebook or Twitter. Take some time to acknowledge how awesome you are, and the progress we’re making together. And, if you can, grab a slice of cake to celebrate!!

 

 

next steps- staff!

We are delighted that we have been awarded funding by the National Lottery through the Big Lottery Fund, for a 2 year pilot project. The Stronger Together project will work to build capacity within and across the rare disease sector and help to identify development areas for the future.

We will employ 2 part time, home based staff, one to cover the Western and Northern Trust areas, the other to cover Southern, South Eastern and Belfast areas.

The Project Officers will build up knowledge and support in their areas, linking with health & social care and other voluntary organisations. The project officer team will be first point of contact for people living and working with rare disease.  The project will provide practical advice, signposting, peer support and volunteering opportunities. It will also work to improve networking, partnership engagement and seek to influence relevant policy.

Our application to the Big Lottery Fund was heavily influenced by the discussions in the workshop series held in the Spring- thanks to everyone for their input in shaping what is becoming the Stronger Together project. We will continue to share our learning to improve services.

Information about the posts and the application process is available at Community NI

 

Please share with anyone you know who may be interested in working with us. Applications close on 7 July, 5pm. CVs will not be accepted.