Vicky McGrath CEO Rare Diseases RIL & Maeve Healy,MDI at the launch of the Get Rare Aware campaign outside the Dáil calling for the number of conditions newborn babies are screened for under HSE National Newborn Bloodspot Screening Programme,

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We are delighted to invite you to Speaking up for ourselves – MDI self-advocacy workshop and community catch-up.

Thursday 25 April 2024
11:30 - 14:00
Woodford Dolmen Hotel

Booking ends: 23:00 on 22 April at 23:00

🔗Tap the link reserve a spot

mdi.ie/event-list/spe…

MDI joined with other members of Rare Diseases Ireland outside the Dáil to launch a new Get Rare Aware campaign calling for the number of conditions newborn babies are screened for under the HSE National Newborn Bloodspot Screening Programme,

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'people might not think that you’re able to do something and they might exclude you from their plans. It would be better for people not to assume and ask anyway.'

🔗Tap the link for more.⁠

#RareDiseaseDay   #MDIRareConditionAwareness  

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Inclusivity benefits us all. Our #InclusivePathways report calls for more publicly available data to support informed decision making and ensure that every student can thrive in higher education. 

🔗 tinyurl.com/3yx9vtj6

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Registations close this Fr March 29th for the MDI self-advocacy workshop & community catch-up at Rochestown Park Hotel Douglas Cork on April 5th . Our speakers are Mary Quirke (Career Confidence Ltd) and Dr Vivian Rath. Full details are at the link.

mdi.ie/event-list/spe…

Sharing his experience as a student with a neuromuscular condition Conor McAuley said 'It’s important that institutions consider the experiences of individuals living with disabilities when they are installing infrastructure.' #InclusivePathways

🔗 tinyurl.com/3yx9vtj6.

We are excited to launch our #InclusivePathways report today. The report highlights the urgent need for improved accessibility in Irish third-level institutions, underscoring the first-hand experiences of students with neuromuscular conditions.

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We have just created a one-stop resource for any child, adult, and family living with a neuromuscular condition. Here you can find some suggestions regarding resources, products, and organisations to assist daily living. Head to the link below

mdi.ie/daily-living-r…

Fatiha Akka shared her experience as a student with a neuromuscular condition: “I had to advocate to get a ramp, accessible toilets & a big enough classroom. I shouldn't need to fight for my right to further education.” #InclusivePathways

🔗 tinyurl.com/3yx9vtj6.

This group is free of charge and for MDI members only. If this is something that may interest you, please sign up by Monday 6th May, or contact Gillian at [email protected] / 086 6066 103.

🔗Tap the link for full workshop details.

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After an excellent first session in Cork with Dr Vivian Rath whereby we focused on “self - advocacy” skills with MuscularDystrophyIRE members, I am very much looking forward to engaging in a second session with Dr Vivian Rath in Liffey valley. Do come along!

DFI made a submission to the The Housing Agency Ireland Review of the Assessment and Allocation guidelines for disabled people seeking social housing last month. We highlighted issues applicants face with the current process.

Read our submission here: bit.ly/3VTp6UR

Happy Rare Disease Day and as it’s a leap year…… its super rare! To mark the occasion and demonstrate that we believe every day should be #RareDiseaseDay , MDI is launching the #MDIRareConditionAwareness campaign.

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🎉 Registration for the 2024 Women's Mini Marathon is selling out fast! 🎉 Secure your spot, set your fundraising goal, and let's make a difference together! Register now at vhiwomensminimarathon.ie 💙 #VhiWMM #TeamMDI

Launching our #InclusivePathways report , MDI CEO Alan Breathnach said “It is vital that the government are proactive and work with the relevant organisations and state bodies to gather and publish more data to support informed decision making.'

🔗tinyurl.com/3yx9vtj6.