Virtual Living Well with events 2021

Upcoming Virtual Sessions

 

Patient Empowerment / Advocacy Session

Thursday October 21st at 11am via zoom, this session will support self-advocacy, which is the ability to speak-up for yourself and the things that are important to you.

To sign up email: info:nirdp.org.uk or join using the Zoom ID below.

Information session Via Zoom October 1st Friday 2021

A session specifically for people affected by Rare Chromosome and Gene Disorders and their families.

Unique is a small charity supporting, informing and networking with families living with a Rare Chromosome Disorders, or some Autosomal Dominant Single Gene Disorders associated with learning disability and developmental delay, among other symptoms.

To sign up email info@nirdp.org.uk or call 0770447929 to

Parents & Carers Session  with guest speaker 
Mae Murray Foundation

September  Thursday 9th at 11am

via Zoom

The session part of the Rare Disease ‘Living well with…’ Programme is delighted to have the Mae Murray Foundation as guest speakers.

The Mae Murray Foundation has been set up to allow people of all ages and abilities to take part in activities, experience the world and enjoy friendship together in an inclusive environment.

Mae Murray Foundation recognise one another to be of equal and inseparable value, regardless of: – physical or learning ability; medical or undiagnosed condition; age or caring role.

Mae Murray Foundation will share information on wide range of innovative all-ability projects for different age groups on offer, as well as how they work to design and implement permanent solutions in everyday environments to break down unnecessary barriers to participation.

 

Come along and learn about the different projects happening and how you can join.

Email: info@nirdp.org.uk to register

 

 

Social Café

August Wednesday 4th  at 11am via zoom, come along to our informal session  – an opportunity to meet others, share, connect and support. Open to all our rare disease community.

To join or for further information email: info@nirdp.org.uk

Caring for your Mental Health

Listen to Professor O’Neill share tips and techniques on how to look after your mental health.

 

 

Living Well with…Programme ( Via Zoom)

Please see all free events below: 

The concept of the ‘Living Well with…’ programme is to offer a series of online events, geared specifically at people living with, caring for, working with or friends of someone with a rare condition. All sessions will be led by the NI Rare Disease Virtual Hub Support Team – Edel & Caroline – and will feature a host of guest speakers covering topics such as exercise, advocacy and mental health.

Details below of free events: 

3rd March @330pm – T’ai Chi delivered by Disability Sport NI.  Come along and try an Introductory session – suitable for all abilities.
12th March @11am –Rare Disease Parents & Carers Information Session, 
with Guest speakers from:
‘Contact’ & ‘The Family Fund ‘ Gain information on services available from Contact – a charity which supports disabled children and how to access funding from the Family Fund and meet up with other carers and parents.
26th March @11am – Rare Disease Social Cafe: this is a really informal session to give our rare disease community the chance to get together for a chat over Zoom.
31st March @3.30pm Love to Move – delivered by Disability Sport NI. Come along and try this Love to Move musical movement session, suitable for all abilities.

NOTE: If you would like more information or to sign up, please email info@nirdp.org.uk or call 07704476929

BREXIT and access to medicines

Before Christmas, NIRDP wrote to the Secretary of State for Northern Ireland asking for reassurance that access to medicines, especially those specialist drugs needed for rare diseases, would be maintained in the event of a No Deal Brexit.

Her reply is below:

Response – SoS – Ms Walker – MC-19-83

Also, the following Written Statement has been issued by the UK Minister of State for Health, Stephen Hammond: https://www.parliament.uk/business/publications/written-questions-answers-statements/written-statement/Commons/2019-02-25/HCWS1358/

Essentially, these confirm that Northern Ireland has been included in the UK wide contingency plans; and access to medicines and medical supplies (including for clinical trials) should be secure, safeguarded by the provision of:

  • additional stockpiles in case of delays to ferry crossings;
  • air transport for time critical supplies;
  • prioritisation of medical supplies in the ferry spaces which government has purchased.

If anyone has a particular worry, contact us on info@nirdp.org.uk, and we will follow up.

Stronger Together Project starts work!

 

Sandra Campbell, Tanya Boggs, and Fiona McLaughlin: Getting the Stronger Together Project off to a great start in Derry! 

Today marks a great step forward for NIRDP and for all those affected by rare diseases in Northern Ireland, as Tanya Boggs, our first “Stronger Together” Project Officer, starts work!

Fiona McLaughlin (NIRDP Chair) and Sandra Campbell (NIRDP Director and Foyle and NorthWest Rare Disease Forum Lead) welcomed Tanya; and started the process of building our “Stronger Together” Project, funded by a grant from the Big Lottery.

Our NIRDP vision is that no one is disadvantaged because of the rarity of their health condition. Stronger Together is a 2 year pilot project which will enable people who live or work with rare disease to connect, advocate, educate and innovate in partnership with each other and others (e.g. Department of Health; other Departments; other charities). The project will provide peer support, volunteering, networking and advice.

It aims to make the ideas put forward  in the Communications Workshops earlier this year, for improving accessibility to information and support into a reality; and so to make a positive difference to the way people affected by rare diseases live.

Come along to the  Foyle and North West Rare Disease Forum meeting in the City Hotel, Derry on Monday 6 November from 11am to 1 pm to meet Tanya and others, and to celebrate this first step on the road!

ANNUAL VASCULITIS IRELAND AWARENESS ALL IRELAND CONFERENCE

Vasculitis Ireland Awareness are hosting their annual All Ireland conference on 28th and 29th of October in the Royal Marine Hotel, Dun Laoghaire.

This year will open with a patient panel, where attendees will have the opportunity to hear more about living with Vasculitis, from diagnosis through to management, comorbidity and the disease from the carer’s perspective, followed by a Consultant’s panel in the afternoon with specialists from Rheumatology, ENT and Orthopaedics.

Julie Power, Founder and Chairperson at Vasculitis Ireland Awareness says “The event will offer many opportunities for discussion about Vasculitis and will include information for attendees about recent developments in research as well as offering a chance to talk to the people involved. This is an ideal opportunity to meet others living with the same issues and to engage with the experts.”

The cost of the event is €45 with accompanying attendees paying €35 each. The cost includes lunch and refreshments on Saturday, after an evening of networking the event will close at noon on Sunday.

To register visit  https://vasculitis2017.eventbrite.co.uk/ and follow us on Facebook for updates Vasculitis Ireland Awareness, alternatively, if you would like more information about this topic, or the event please contact Julie Power at 02844842889 or email at julie@vasculitis-ia.org.

Who knows what in rare disease? Engagement, information and communication

As part of the work on the NI Rare Disease Plan, NIRDP has been running a series of Workshops across Northern Ireland, and an Online Survey, to identify information needs in relation to rare disease issues; what information is currently available and what information people would like to help them live or work with rare conditions.

On 7 June, a workshop chaired by Professor Ian Young, the Chief Scientific Officer and Chair of the NI Rare Disease Implementation Group,  heard about progress in genetics, presented by Dr Tabib Dabir, Clinical Lead, NI Regional Medical Genetics Service (and member of NIRDP’s Board)  and in metabolics, presented by Dr Clodagh Loughrey, Consultant Chemical Pathologist and Clinical Director Laboratories, BHSCT.

It’s clear from these presentations that the pathway to diagnosis, and the options available for management and treatment of complex and rare conditions, will soon alter dramatically.  Indeed some changes are already happening, with an individual’s genetic make up helping to determine the best course of treatment in some cases. It’s essential that we think through how to make best use of these advances!

Participants then considered the emerging findings from the Workshops and the Survey, presented by Dr Jane Miller, Research Fellow at the NI Genomic Medicine Centre  and NIRDP Chair Fiona McLaughlin, before working in five groups to validate and  consider how progress could be made on the key areas identified in the Workshops and in the Survey.

Suggestions for improving information and communications

  • Develop care pathways / flow charts / support plans / signposting.
  • Have one ‘go to person’ who co-ordinates care and information sharing between those involved in care:  “Care navigators” to support patients, families, and clinicians.
  • Develop a hub / portal for accessing information for medics, other professionals and people with a rare condition/disease.
  • Develop referral routes to support groups, or to other people with the same condition, from the point of diagnosis.
  • Look and take learning from other models e.g. Cancer Care; Maternity Care (where mothers hold information in The Red Book) Downs Syndrome etc.

There were many valuable suggestions, and much learning across the whole group- for example, about the proposed introduction of the SNOMED coding system across both primary and secondary care; and planned technological developments within Health & Social Care.  Also, locally based training for patients, along the lines of the EUPATI modules some of our members are already familiar with, is hopefully to become available.

We are still processing all the information that emerged; and planning follow up through a virtual working group to take forward the ideas in more detail.

Further details to follow- watch this space!

And if you haven’t already done so, please complete the Survey and get your family and health care colleagues to do so too …