Busy times at the NIRDP

Well, it has certainly been a busy few months for the NIRDP team; we have hosted events, participated in events and even got out and about at Queens University Belfast with a bit of lecturing.

Below is just a snippet of what we have been getting up to since January:

  • 29 January; our colleagues at QUB hosted an event, ‘Advancing registry and information resources for rare diseases’.
  • 3 February; we participated in the annual Action Duchenne NI event
  • 28 February; rare disease events at Bangor Castle and Guildhall, hosted by the 2 mayors
  • 5 March; Joint North- South Rare Disease Conference, Belfast
  • 9 March; lecture for 5th year medical students, QUB
  • 12 March; lecture for 1st year medical students, QUB

And that is just a small part of the story!

NIRDP volunteers and staff work hard to connect, share and learn. Most of us juggle some combination of health issues, caring responsibilities, paid work and other volunteering, which means that few of us can work full time on NIRDP activities. Luckily, we have a strong belief in partnership working, and even better, we have seen just how effective it can be!

Our conference, an all island event, was a great example of this . Also, a phenomenal task! We were extremely lucky, and grateful, to receive lot of the practical support from the Department of Health in making this happen.

Attendees came from across the whole island, and speakers, representing the public, private, voluntary and academic sectors, were on hand to share their expertise.

We were delighted to host the Minister of State from the Office of the Taoiseach, Joe McHugh, Chief Commissioner of NI Human Rights Commission, Les Allamby, Chief Medical Officer, Dr Michael McBride, Mark Taylor from the Bengoa Expert Panel, and Bettina Mavrommatis from NHS England.

The sessions covered topics including:

  • ‘Nothing about us without us’
  • rare disease policy
  • participating in research
  • building capacity
  • ‘what does success look like?’
  • ‘beyond the strategies; next steps’

In addition to the weighty agenda, NIHRC held a side event during the lunch break and Northern Visions (NVTV) recorded interviews and conference footage which were later broadcast (click here to see more).

Towards the end of the day Dr Tabib Dabir (Clinical Director Molecular Diagnostics and Microbiology) and Dr Avril Kennan (Chief Exec, Medical Research Charities Group) judged our poster competition, and Minister McHugh presented the prizes and NIRDP awards. The award for Public Service was presented to Dr Fiona Stewart, and NIRDP award for Community Service went to Rosemary Arbuthnot.

Most importantly, our events would not have enjoyed such huge success if it were not for the participation of all our members and partners. Thank you to everyone who was able to participate by attending any of the events (despite the blizzards!), or by sharing our social media posts.