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! 

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