Tag Archives: #strongertogether

Foyle & NW forum

We had a meeting of our Foyle group on Monday 6 November & were delighted to mark the start of the Stronger Together project in the area. Our Project Oficer is Tanya Boggs, and she’ll be working across NHSCT and … Continue reading

Posted in Events, Uncategorized | Tagged , , , , , , , , | Leave a comment

Stronger Together Project starts work!

  Sandra Campbell, Tanya Boggs, and Fiona McLaughlin: Getting the Stronger Together Project off to a great start in Derry!  Today marks a great step forward for NIRDP and for all those affected by rare diseases in Northern Ireland, as … Continue reading

Posted in Events, Rare Disease Implementation Plan, Updates | Tagged , , , | Leave a comment

Who knows what in rare disease? Engagement, information and communication

As part of the work on the NI Rare Disease Plan, NIRDP has been running a series of Workshops across Northern Ireland, and an Online Survey, to identify information needs in relation to rare disease issues; what information is currently … Continue reading

Posted in Events, Rare Disease Implementation Plan, Updates | Tagged , , , , , , , | 1 Comment

Good News on access to drugs for rare conditions: Thank you, Minister!

Health Minister Michelle O’Neill today announced that eligible patients in the north of Ireland will receive innovative new drugs for the treatment of very rare conditions. The Minister has confirmed that drugs evaluated under the Highly Specialised Technology Programme of … Continue reading

Posted in Rare Disease Implementation Plan, Updates | Tagged , , , , , | Leave a comment

Rare Disease Day 2016 Patient Voice and Empowerment

Rare Disease Day 29 February is getting close!  Here are the full programmes for the Conference in Riddel Hall, and for the Reception in the Long Gallery at Stormont; follow the links in the post below to register NOW The … Continue reading

Posted in Events, Rare Disease Implementation Plan, Updates | Tagged , , , , , , | Leave a comment