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

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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:

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Making our voices heard

We know that if something isn’t counted, it doesn’t count… And we all want to use our experiences and our knowledge to make positive change happen in our health and social care system.  So we are working to make sure that the voices of rare disease patients and families – and the voices of their carers, whether that is family, friends, clinicians, social care professionals – are gathered, and reported so that those voices count.

We are running our own short survey at the moment – and the response has been great! Spread the word and get more responses in so we can have a report ready to publish in the autumn.

TAKE THE SURVEY HERE

In addition, we are working with the Public Health Agency’s 10,000 Voices Programme to make sure that their surveys can capture and report the experiences of rare disease patients and families.

There are two surveys currently running:

  • Out of hours GP and emergency care; and
  • the experience of contact with the health and social care system.

Both can be accessed through the 10,000 Voices website: www.10000voices.info

It would be good if as many people as possible can complete these surveys: the 10,000 Voices Team have facilitators who can help; and are keen to work with us to ensure that the experiences of rare disease patients and families are heard.

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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 the National Institute for Health and Care Excellence (NICE), will be made available to patients with very rare conditions including atypical Haemolytic Uraemic Syndrome, mucopolysaccharidosis type IVa and Duchenne muscular dystrophy caused by a nonsense mutation.

The Minister said: “My Department is working with the HSC on a range of initiatives to bring more efficient and effective processes right across the system in prescribing, workforce planning and service delivery. I will continue to make decisions based on clinical advice and will work with my colleagues in the Executive to make sure that health and wellbeing remains a priority for all.
There are many challenges facing us in health and social care. From today, access to the most innovative medicines for the rarest conditions is not a challenge for patients in the north of Ireland.”

This is very welcome news, which will transform lives.
We will continue to work closely with the Department, and with the HSC to ensure that those living with rare diseases are not disadvantaged simply because of the rarity of their condition; and to support changes to make the system more efficient and effective

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You couldn’t make it up…

Many of us have had those moments. The moments when we’ve been baffled/ bewildered/ outraged by our dealings with healthcare professionals:
e.g. A&E telling you your case is too complicated and to talk to your GP
e.g. your GP telling you to register at another practice because your condition is too complex
e.g. your ‘specialist’ telling you they don’t believe in your condition.

We’d like to collate these, and share them, to help make a difference.
What’s your moment?

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