Are you interested in learning more about rare diseases and the supports available for those affected by them? If so, South Dublin Libraries has put together a series of talks in May and June 2023 that you won't want to miss. SMA Ireland is thrilled to support this initiative, and we encourage all members to take advantage of this opportunity. Here's a rundown of the schedule:
Thursday, May 4th at 7pm
Join Vicky McGrath of Rare Diseases Ireland for a talk on Rare Diseases in Ireland: The Background. What is a rare disease, and why is it not as rare as you might think? This talk will cover the experiences of people living with rare diseases in Ireland and the healthcare available to them.
Booking at talib.eventbrite.com
Thursday, May 11th at 7pm
Join the Huntington's Disease Association of Ireland for a talk on The Diagnostic Journey: A Patient's Perspective. Hear firsthand from a person and their family about the long, difficult, and stressful road to diagnosis.
Booking at clondalkinlibrary.eventbrite.com
Thursday, May 18th at 7pm
Join Jacqueline Turner, Genetic Counsellor at the National Rare Diseases Office, for a talk on The Work of the National Rare Diseases Office. Jacqueline has worked for over 25 years as a Genetic Counsellor in Ireland and has always put rare disease patients at the heart of her work. She'll talk about the rare disease patient journey and the advancements that have taken place and that are foreseen that will hopefully shorten the journey and lighten the load.
Booking at ballyroanlibrary.eventbrite.com
Thursday, May 25th at 7pm
Join Rare Ireland for a talk on Rare Diseases and Children. If you're a parent of a child with a rare disease, this talk will provide valuable information and support.
Booking at castletymonlibrary.eventbrite.ie
Thursday, June 8th at 7pm
Clare Duffy of Family Carers Ireland is back with a talk on the Fair Deal Scheme Information Session. She'll provide an overview of the Fair Deal (Nursing Home Support) Scheme, explaining how to apply, the assessment and steps involved, and the calculations that are used to determine an individual's financial contribution towards the cost of their nursing home care.
Booking at clondalkinlibrary.eventbrite.com
Thursday, June 15th at 7pm
Join the Open Doors Programme for a talk on Towards Work. Towards Work is a person-focused initiative that exists to support individuals with disabilities as they seek employment, further education, or setting up their own business to be self-employed. Learn more about this program and how it can help you achieve your goals.
Booking at northclondalkinlibrary.eventbrite.com
Thursday, June 22nd at 7pm
Join us online for a talk on Rights and Entitlements for Family Carers with Clare Duffy of Family Carers Ireland. Navigating the supports, payments, and schemes available to family carers can be tricky, but Clare Duffy is here to help explain the main payments available to carers and their eligibility criteria. Don't miss your chance to learn more about Carer's Allowance, Carer's Benefit, Domiciliary Care Allowance, and the annual Carer Support Grant.
Booking at lucanlibrarydublin.eventbrite.ie
Thursday, June 27th at 7pm
Join Professor Sinead Murphy, Consultant Neurologist at Tallaght University Hospital, for a talk on The Diagnostic Journey: A Neurological Point of View. Professor Murphy has particular expertise in inherited neuropathies and ataxias and leads the National Ataxia Clinic in TUH. She'll explore the diagnostic journey for a rare disease from a neurological and professional point of view.
Booking at talib.eventbrite.com
Booking is essential for each of these talks, so be sure to visit the links provided to reserve your spot. We hope to see you there!
Thursday, May 4th at 7pm
Join Vicky McGrath of Rare Diseases Ireland for a talk on Rare Diseases in Ireland: The Background. What is a rare disease, and why is it not as rare as you might think? This talk will cover the experiences of people living with rare diseases in Ireland and the healthcare available to them.
Booking at talib.eventbrite.com
Thursday, May 11th at 7pm
Join the Huntington's Disease Association of Ireland for a talk on The Diagnostic Journey: A Patient's Perspective. Hear firsthand from a person and their family about the long, difficult, and stressful road to diagnosis.
Booking at clondalkinlibrary.eventbrite.com
Thursday, May 18th at 7pm
Join Jacqueline Turner, Genetic Counsellor at the National Rare Diseases Office, for a talk on The Work of the National Rare Diseases Office. Jacqueline has worked for over 25 years as a Genetic Counsellor in Ireland and has always put rare disease patients at the heart of her work. She'll talk about the rare disease patient journey and the advancements that have taken place and that are foreseen that will hopefully shorten the journey and lighten the load.
Booking at ballyroanlibrary.eventbrite.com
Thursday, May 25th at 7pm
Join Rare Ireland for a talk on Rare Diseases and Children. If you're a parent of a child with a rare disease, this talk will provide valuable information and support.
Booking at castletymonlibrary.eventbrite.ie
Thursday, June 8th at 7pm
Clare Duffy of Family Carers Ireland is back with a talk on the Fair Deal Scheme Information Session. She'll provide an overview of the Fair Deal (Nursing Home Support) Scheme, explaining how to apply, the assessment and steps involved, and the calculations that are used to determine an individual's financial contribution towards the cost of their nursing home care.
Booking at clondalkinlibrary.eventbrite.com
Thursday, June 15th at 7pm
Join the Open Doors Programme for a talk on Towards Work. Towards Work is a person-focused initiative that exists to support individuals with disabilities as they seek employment, further education, or setting up their own business to be self-employed. Learn more about this program and how it can help you achieve your goals.
Booking at northclondalkinlibrary.eventbrite.com
Thursday, June 22nd at 7pm
Join us online for a talk on Rights and Entitlements for Family Carers with Clare Duffy of Family Carers Ireland. Navigating the supports, payments, and schemes available to family carers can be tricky, but Clare Duffy is here to help explain the main payments available to carers and their eligibility criteria. Don't miss your chance to learn more about Carer's Allowance, Carer's Benefit, Domiciliary Care Allowance, and the annual Carer Support Grant.
Booking at lucanlibrarydublin.eventbrite.ie
Thursday, June 27th at 7pm
Join Professor Sinead Murphy, Consultant Neurologist at Tallaght University Hospital, for a talk on The Diagnostic Journey: A Neurological Point of View. Professor Murphy has particular expertise in inherited neuropathies and ataxias and leads the National Ataxia Clinic in TUH. She'll explore the diagnostic journey for a rare disease from a neurological and professional point of view.
Booking at talib.eventbrite.com
Booking is essential for each of these talks, so be sure to visit the links provided to reserve your spot. We hope to see you there!
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