Foyle and North West Rare Disease Forum

Foyle and North West Rare Disease Forum

Date: Saturday 10th December
Time: 2.00pm – 4.00pm
Venue: McCorkell Suite, City Hotel, Derry/Londonderry, BT48 7AS

The Foyle and North West Rare Disease Forum will be holding their next meeting at the City Hotel on the 10th December.

The group connects families living with rare disease in the region removing isolation and creating a shared forum for information exchange and mutual support.

Fiona McLaughlin, Chair of the NIRDP, and Christine Collins, former Chair and Board Member, will be there listen to the concerns of local members. They will also be updating us on engagement opportunities and current programmes that are informing service design and planning for future services.

Refreshments will be provided. Let us know if you have any special dietary requirements. Children welcome to attend with parents

Contact Sandra Campbell on 07512 880466 or sandra@nirdp.org.uk

AGM and Autumn Partnership Meeting

Our 4th AGM  will be held at 11.00 0n Thursday 20 October 2016 

at the Civil Service Sports Pavilion, Stormont, Upper Newtownards Road, Belfast BT4 3SU.

Registration,  tea/coffee and scones will be from 10.15.

After the AGM proceedings, we will welcome guests (including MLA’s and other elected representatives) to our Autumn Partnership Meeting, starting at 11.45  

The  Outline Programme is:

  • The importance of a diagnosis in rare diseases (Gillian Cassidy, 22Q Support Group);
  • Progress at the Northern Ireland Genomic Medicine Centre (Cheryl Flanagan, Project Manager)
  • Progress on the NI Rare Disease Implementation Plan
  • Developments in the reform of the Health and Social Care system

This will be followed by refreshments; and a chance to exchange news and views!

Please Register here for the AGM:

Please Register here for the Autumn Partnership Meeting only:

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! 

Great News! NI’s RD Implementation Plan and Genomic Medicine Centre Announced

Minister Simon Hamilton today  announced a £3.3m investment into the creation of an innovative Northern Ireland Genomics Medicine Centre (NIGMC); and formally launched the Northern Ireland Rare Disease Implementation Plan: wonderful news for patients, carers, and clinicians living and working with rare disease!
Minister Hamilton said:
“The Plan embodies my commitment to implement the UK Rare Diseases Strategy in Northern Ireland. It provides a holistic approach to caring for people with a rare disease and to maximise the available resources for research, innovation and collaboration across the UK to benefit the entire rare disease community. The Plan also provides the opportunity to work with the Republic of Ireland to realise the mutual benefits of cross ­border collaboration on rare diseases.”

For everyone living and working with rare disease, this  commitment by the Minister brings hope, and an opportunity to participate in building a better future for all families living with a rare disease. It’s a superb new resource for the clinicians working to give their patients a diagnosis and improve understanding of their conditions. It gives a clear framework and impetus for work on  creating new pathways for treatment and management.

We’ve worked together (patients, families, elected reps, clinicians, managers, officials) to get the UK Strategy; the NI Plan; and the Genomic Medicine Centre.  We will keep working together, to reap the full benefits and provide better opportunities for all our young people and families into the future.

NIRDP’s Newry Mourne and South Down Group Meeting 24 September

NIRDP’s Newry Mourne and South Down Group will meet this Thursday, 24 September, from 7pm to 9pm in the Mourne Country Hotel.

The Guest Speaker will be Geraldine Maguire, Assistant Director  from the Southern Trust; and we hope that it will be an informative and constructive meeting..we are stronger together!

Please contact Fionnuala, (e mail: bengie15@aol.com) for details..

Rare Disease and Research Seminar Programme: Understanding and Managing Behavioural Changes in Huntington’s Disease

The Programme of Rare Disease and Research mini Seminars, bringing internationally recognised experts and senior NI Clinicians together to improve practice, kicks off on 17 September at 5.30 pm in the Postgraduate Medical Lecture Theatre at Belfast City Hospital, Lisburn Road, Belfast, BT9 7AB.

Errol Walsh from HDANI, whose step daughter Rachel suffered from HD, will give the family perspective; and Prof. Jane Paulsen, from the University of Iowa, will give the keynote address on what her research has shown about understanding the behavioural changes in HD, and how best to manage these.

Dr Seamus Kearney, Consultant Neurologist at the Belfast Trust, will be setting the Northern Ireland scene, and Sorcha McGuinness, Executive Director of HDANI, will set out the Patient Organisation contribution, leading to a Panel discussion about how research findings on HD can be used to change clinical and social care practice, improving outcomes for all those affected by HD.

There’s a food and drink reception at 5.30; so please use the link below to Registerincluding giving any dietary or access requirements – so that we can make sure everyone is catered for!

Palliative Care: The Lets Talk About Survey

The All Ireland Institute of Hospice and Palliative Care’s “Let’s Talk About” care survey is gathering experiences, good and bad, about palliative care in the Republic of Ireland and Northern Ireland.

Many people with rare diseases live with a serious or progressive medical condition from which they are unlikely to be cured and which may limit or shorten their life.

Taking a palliative care approach helps to give people the best possible quality of life. You can help improve policy and services by sharing your real life experiences in this survey. Palliative care is an essential element in supporting all those living with serious and progressive conditions to live life to the fullest possible extent.
If you have had an experience of palliative care, good or bad, please take the time to complete the AIIHPC’s survey, anonymously, so that your experience can help build better provision for the future. Further information, and the survey, is available on line at http://aiihpc.org; or contact Cathleen Mulholland at cmulholland@aiihpc.org or phone 00 353 (0) 1 491 2948

Collagen – Why Do We Need It?

With support from the Research and Development Division of the Public Health Agency, and in collaboration with the Regional Medical Genetics Service and QUAMS, we are bringing  two external, internationally recognised experts on Connective Tissue disorders and translational genomic medicine, to join with our local experts in a “mini Symposium”, chaired by Professor Patrick Morrison, on connective tissue disorders.

The expert speakers are:

Professor Dianna M. Milewicz, M.D., Ph.D. President George H.W. Bush Chair of Cardiovascular Medicine Director of the Division of Medical Genetics Professor and Vice-Chair of the Department of Internal Medicine The University of Texas Health Science Center at Houston, TX

Professor William Newman, MA FRCP PhD Professor of Translational Genomic Medicine Manchester Centre for Genomic Medicine St Mary’s Hospital Manchester

Dr V McConnell, MD, MRCGP, DRCOG, PGCCE, Clinical Lead, Regional Medical Genetics Service, Belfast Health and Social Care Trust

Dr A Pendleton, FRCP (Ed), FRCP (I), FBASM, Consultant Rheumatologist,  Belfast Health and Social Care Trust

Our aim is to raise awareness of collagen disorders, and provide information on how to understand the diagnosis, and the appropriate treatment and management of these conditions, which from the relatively mild to the life threatening.

The event will provide a focus for patients and carers to improve their knowledge and understanding, and enable them to participate from an informed basis in their care, and in appropriate self-management strategies.

It will add to the knowledge base of clinicians and other health professionals and scientists by providing a world class up to date information and evidence session: and it will enable medical students to learn from internationally renowned experts not normally available in Northern Ireland.

CPD accreditation (2 external clinical CPD Points from the Royal College of Physicians) has been obtained for the event: Registration is required for Certification.

Please Click Here to Register Now!

Where?
Lecture Theatre, Medical Biology Centre, Queen’s University Belfast, Lisburn Road, Belfast

When?
18.00 to 21.00, 24 March 2015

Implementation Plan Consultation: Open Meetings

The Open Meetings on the Draft Rare Disease Implementation Plan are ongoing:

6 January 2015: Lecture Theatre, Level 2, South West Acute Hospital, 124 Irvinestown Road, Enniskillen Co Fermanagh, BT74 6DN, 3.30pm to 5.30 pm

7 January 2015: Mourne Country Hotel, 52 Belfast Road, Newry, Co Down BT34 1TR, 7pm to 9 pm

8 January 2015: Conference Room, Portadown Health and Social Services Centre, Tavanagh Avenue, Portadown, BT62 3BU, 2pm to 4pm

12 January 2015: Whinstone Suite, Antrim Civic Centre, 50 Stiles Way, Antrim, BT41 2UB, 1pm to 4 pm

13 January 2015: Lecture Theatre, Block A, Royal Victoria Hospital, Grosvenor Road, Belfast, BT12 6BA, 2pm to 5pm PLEASE NOTE: NEW TIME!!

This is your chance:

  • to listen to what is in the Plan; ( http://www.dhsspsni.gov.uk/showconsultations?txtid=74325 )
  •  to have your say, about what matters to you- whether it’s in relation to a health or social care aspect of living or working with a rare disease, or how having a rare condition impacts on education, transport, work, or housing.

Whether you are a patient, a carer, a member of Health and Social Care staff, or anyone whose work involves tackling the challenges of rare disease, this is your opportunity to shape the future; and to make a difference.

Please register through eventbrite,  http://nirdp.eventbrite.co.uk-  so we know numbers/needs for catering; and so that we can make sure there is enough reserved parking for disabled access etc.   But if you don’t register, you will still be very welcome!