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 Conference is a unique opportunity to hear from Dr Michael McBride ,our Chief Medical Officer and from a range of patients, carers, and professionals about what is already happening; and to engage in developing what more could be done to make a difference to the lives of those affected by rare disease.

INTERNATIONAL RARE DISEASE DAY CONFERENCE: PATIENT VOICE AND EMPOWERMENT
10.00 to 10.30 Registration
10.30 to 10.35: Welcome – Christine Collins, Chair, NIRDP
10.35. to 10.45: Keynote Address: Rare Disease and HSC Transformation- Dr Michael McBride, Chief Medical Officer, Northern Ireland
10.45 to 11.20: Educating: Miriam Martin, SACA; Dr Mairead Corrigan, QUB; Michaela Hollywood, MDUK Trailblazers;
11.20 to 11.55: Advocating: Fiona McLaughlin PSPA NHS IQ Certificated Change Agent;  Noirin O’Neill, EUPATI Fellow; Sandra Campbell, NIRDP Foyle and North West Co ordinator; Carol McCullough, NIRDP Consultations Lead
11.55 to 12.30: Innovation: Alison Wilson, All Ireland Advocacy and Support Officer, MPS Society;Dr Breidge Boyle, UU; Julie Power, Vasculitis Ireland, EUPATI Fellow; Joanne Westwood, N.I. Neurological Care Advice Service
12.30 to 12.45: Round up of Panel Sessions: Reflections
13.00 to 13.45 Lunch: INFORMATION STANDS, INCLUDING RNIB; ACTION FOR HEARInG LOSS; 10K VOICES; AND PATIENT ORGANIZATIONS
13.45 to 14.00: NI Medical Genomic Centre Dr AJ McKnight, QUB
14.00 to 15.15: Seizing the opportunity “POLICY INTO PRACTICE” interactive workshop David Finegan, NIRDP
15.15 TO 15.30 : CONCLUSIONS AND CLOSE

The Long Gallery Reception is a chance to hear from Alastair Kent OBE, the Chair of the UK Rare Disease Forum, about the role of patients in driving and developing change; and to hear from Minister Simon Hamilton about his vision of the way ahead.

NIRDP International Rare Disease Day Reception at Stormont

17.00 to 17.30: Registration
17.30.to 17.45: Welcome and introduction: Kieran McCarthy, MLA; Dr Vivienne  McConnell, Clinical Lead for Medical Genetics

17.45 to 18.00: Alastair Kent OBE: The role of empowered patients in oversight

18.00 to 18.10: Minister Simon Hamilton MLA: Working together to provide high quality care for people with rare diseases
18.10-18.15: Thanks and Close: Christine Collins, Chair NIRDP
18.15 to 19.00: Photo Opportunities and Networking: Refreshments

See the post below to register! 

Living Life with Rare Disease: Taking the scare out of Palliative Care

It’s time for our Summer Meeting! This year, we are holding it, on Friday 26 June, in the Day Room at the Foyle Hospice, 61 Culmore Road, L/Derry. Our theme is “Taking the scare out of Palliative Care”.

Palliative care is all about making the very best of life, from diagnosis on; and even when you have no diagnosis.  It’s about how to ensure the support that’s needed to live life to the full, in difficult circumstances.

We have a terrific line up of speakers, so this is a great opportunity to hear and learn about how a palliative care approach can support and improve quality of life, from diagnosis onwards or even if you have no diagnosis.  It’s a chance to have your say about how palliative care can be developed, for all those living or working with rare diseases.
A chance to meet up, make new friends and contacts, and share your knowledge and experience!

Register here:

Outline Programme:
9.30-10.00 REGISTRATION: Tea/Coffee; Scones
10.00 TO 13.45 PALLIATIVE CARE AND RARE DISEASE PROGRAMME:
10.00-10.35 Welcome: NIRDP Representative
10.35-10.45 A Patient/Carer’s Perspective: Sandra Campbell, NIRDP
10.45-11.05 Dr Aine Abbott, RCGP (NI): Supporting Communication: the Patient Passport
11.05-11.25 Dr Damien McMullan, Consultant, Adult Palliative Care
11.25- 11.45 Dr Heather McCluggage, Associate Specialist, Children’s Palliative Care
11.45-12.05. Katie Rigg, Nurse Specialist, Multiple Systems Atrophy Association
12.05-12.25 Donall Henderson, Chief Executive, Foyle Hospice
12.25-12.45 Paddie Blaney, Director, AIIHPC :
12.45- 13.45 Discussion Session: What needs to be done to improve support for rare disease?

LUNCH AND NETWORKING: 13.45 to 14.30
To include Soup, Sandwiches, and meeting and getting to know others.

If you want to join us just for the lunch and networking, please email events@nirdp.org.uk; and we will try to facilitate this; but we would encourage you to come and hear about how a palliative care approach can help make the most of living every day with a rare disease.

SURVEY DEADLINE EXTENDED

Good News!  Our original end March deadline for responses to the “Living Every Day with Rare Disease” Survey has been extended: so we now have some more time to get our voice heard.

If you haven’t done so already, go to the Survey (see the Living Every Day with Rare Disease tab, on the bar above) and complete the survey; or e mail info@nirdp.org.uk and we will send out paper copies, or arrange for someone to phone you to complete it .

And please pass the word around; get Support Group Members, carers, professionals to complete the Survey too. We need as many responses as we can, to demonstrate that Rare Diseases matter to a lot of people, and to show the impact that they have on people’s lives…