Check this out! An anonymous questionnaire about your well being!
Who are we? A team of researchers from the UCD School of Psychology in collaboration with Muscular Dystrophy Ireland.
A statment from MDI regarding the referendums on family, care and gender equality
MDI has “no position as an organisation” on the forthcoming referendum. This referendum will be a deeply personal matter to each individual.
Irish Wheelchair Association’s ability programme inviting jobseekers
Providing holistic, person-centred Coaching to enable a person to become an independent jobseeker or employee. Funded by the Dormant Accounts Fund and administered through Pobal, Ability is an employability and job-seeking skills programme for people aged 18 and over with a physical disability who want to get closer to work and progress on their career journey.
New Campaign for Neurology Services Launching March 12th
We’re one of 23 organisations joining the Neurological Alliance of Ireland’s Patients Deserve Better campaign which is calling for regional neurology services in 5 hospitals across the country.
Spotlight on members of our community living with neuromuscular conditions: Jimmy Murray
I don’t like the words inspiration / inspiring. That’s not my role in life. My job is to live life and not be an inspiration to people, though they mean well. A lot of people with disabilities hate that.
Barretstown and MDI, Youth Camp 2024
MDI are delighted to announce an exciting new partnership with Barretstown Children’s Charity to run this years MDI Youth Camp. To celebrate we are working hard to organise a wonderful weekend away from 25th - 26th of May for some of our young members aged between 1 - 17 years old with their immediate families or carers.
Important Update Regarding Our Home From Home Service Pricing Structure
Further details will be provided as we finalize this new pricing structure which will come into effect on April 2nd 2024, and the way you book our Home From Home service is going to change.
Concerns Green Paper Social Protection Disabliity Reform
Members of Disability Federation of Ireland are very concerned about the implications of the Department of Social Protection’s Green Paper on Disability Reform and report that the people they support in the community are deeply worried.
HSE Patient Feedback For National Genetics And Genomics Office
National Genetics & Genomics Office are aiming to better understand what people who are referred to genetic and genomic services, and their families, need to know to help them better navigate services. The knowledge gained will be used to work towards an improved patient experience of using genetic and genomic services. More information the advert attached. Expressions of interest close on 23rd February 2024.
Inclusivity for Persons With Disabilities? The Electoral Rights of Persons With Disabilities in the European Union
The first instalment in the 2024 Institute of International and European Affairs (IIEA) Disability Policy series will take place this Friday 16 February at 1pm when Dr Alejandro Moledo, Deputy Director of the European Disability Forum, will discuss the ‘The Electoral Rights of Persons with Disabilities in the European Union’ on a webinar.
Watch the MDI Community Supports Webinar And Download Our Case-Study Document
Organisations that focus on many aspects of life, such as Independent Living, employment, education and housing, presented information on the services they provide. Some of the presenters are themselves living with a disability.
Action Duchenne: Winter Webinar – James Poysky
As part of Action Duchenne’s: Science Education programme, they will be running a series of Winter Webinars with some of your favourite Duchenne experts! Action Duchenne are delighted to announce that they will be welcoming renowned psychologist and Duchenne expert Dr James Poysky to theiir webinar series.
EMA confirms recommendation not to renew marketing authorisation for Translarna
The CHMP agreed to re-examine its decision on request of the manufacturer PTC. This took place in January and despite efforts from the manufacturer and patient community the EMA announced on Friday, 26 January 2024 recommendation for non-renewal of authorisation of Translarna. The process found that while there was evidence of benefit from the treatment, it’s not statistically significant. Importantly there was no concerns about the safety of the treatment.
European Reference Network – Patient reported outcome measure.
The Patient Advisory Board of the European Reference Network on Neuromuscular Diseases (ERN EURO-NMD) have prepared the following survey for adults (aged 18 and over) living with a neuromuscular condition. The purpose of this survey is to identify the types and severity of symptoms individuals experience
State of Caring 2024 – Family Carers Ireland
On behalf of Family Carers Ireland, you are invited to participate in their State of Caring 2024 survey. This biennial survey is a vital initiative aimed at comprehensively understanding the lives and experiences of family carers across Ireland who are currently providing care. Previous reports have played a crucial role in shedding light on the impact of caregiving.
Rare Disease Clinical Trials Conference
https://docs.google.com/forms/d/e/1FAIpQLSfX6gzjUhklikV6MOJxkuKQR9EN0OkkWT8um16rTBoM2Q8xbQ/viewform
Expression of Interest - MDI Research Committee
Two positions have become available on the Muscular Dystrophy Ireland (MDI) Voluntary Research Committee. We are seeking expressions of interest for a person with lived experience of neuromuscular conditions. This includes people living with a neuromuscular condition, or a family member of a person living with a neuromuscular condition. We also welcome expressions of interest from health professionals, researchers and others who are working in or have an interest in contributing and partnering in the development of MDIs research strategy.
Opportunity: Volunteer Driver for Muscular Dystrophy Ireland
Muscular Dystrophy Ireland are looking for a volunteer driver. Volunteer drivers transport service users from their homes and other pick-up points to medical appointments, therapy sessions, support groups, and other essential engagements. A vehicle will be provided by MDI (Muscular Dystrophy Ireland,). This vehicle is stationed at MDI head office.
Power of Disability - Event for students, by students
This two-day online event will include discussions, presentations and feedback sessions encouraging students with disabilities to be leaders on their own campuses and will build practical skills on self-advocacy and constructive advocacy. Registration is free to attend, but registration is limited so you must book a spot in advance.
Disability Federation Ireland statement on Disability Action Plan 2024-2026
Disability Federation of Ireland (DFI) issued a statement in response to its publication, representing its member organisations, including Muscular Dystrophy Ireland. They acknowledge the extensive work that has gone into preparing the Action Plan and that the commitment by the Department of Children Equality, Disability, Integration and Youth (DCEDIY), Ministers Rabbitte and O'Gorman and the HSE to address the crisis in disability services.