Returns filed on the Register of Lobbying, newest first, with the policy area and intended results as the lobbyist published them.
Expansion of the programme to increase the number of conditions screened for, to be in line with the European average of 18 conditions. In 2022, the condition, ADIA-SCID was added to the NBS programme, however this hasn’t been fully implemented yet. In November 2023, Spinal…
To secure funding to enable the delivery of services to people with intellectual disabilities / autism
Published name "Muiriosa Foundation" equals CRO name "MUIRIOSA FOUNDATION" (CRO 353975) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Increased knowledge and understanding of unmet needs of people living with rare diseases.::PQs to Minister to seek commitment to deliver expanded newborn bloodspot screening program.::Expansion of newborn bloodspot screening panel to bring us inline (at minimum) with average…
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Inclusion of rare disease priorities in political party manifestos.::Inclusion of rare disease priorities in programme for government following next general election.
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
To invite TDs and Senators to attend an event hosted by the Irish Cancer Society to discuss the Society’s recommendations in the Pre-Budget 2025 Submission. ::To raise awareness of the Irish Cancer Society’s Pre-Budget 2025 Submission.
Published name "Irish Cancer Society" equals CRO name "IRISH CANCER SOCIETY" (CRO 20868) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Raising awareness and support for the delivery of commitments to neurological care outlined in Budget 2022 and Budget 2023 Raising awareness and support for future further investment in neurological care services, including in Budget 2025::Increased awareness of the needs of…
Published name "Neurological Alliance of Ireland" has no legal form. "NEUROLOGICAL ALLIANCE OF IRELAND COMPANY LIMITED BY GUARANTEE" (CRO 366603) is the only CRO company with that name plus any legal form (Limited, DAC, UC, CLG, PLC or Teoranta). Confirm against the CRO record before relying on it.
Increased funding for dementia supports and services
Published name "The Alzheimer Society of Ireland" equals CRO name "THE ALZHEIMER SOCIETY OF IRELAND" (CRO 102700) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
increased political awareness and support for dementia issues
Published name "The Alzheimer Society of Ireland" equals CRO name "THE ALZHEIMER SOCIETY OF IRELAND" (CRO 102700) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
To inform representatives of issues impacting the home care sector including recruitment challenges, the Statutory Home Support Scheme, social welfare reform and disability home support.::To arrange meetings with representatives to discuss issues impacting the home care sector
Support to revisit policy, legislation and process to approve reimbursement of orphan medicines
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
To inform public representatives of a range of considerations concerning public policy relating to e-cigarettes and vaping.
Published name "Creative Retail Distribution Limited" equals CRO name "CREATIVE RETAIL DISTRIBUTION LIMITED" (CRO 539887) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
To invite Irish politicians to support or attend the annual March for Life
Increased knowledge and understanding of unmet needs of people living with rare diseases.::PQs to Minister to seek commitment to deliver expanded newborn bloodspot screening program.::Expansion of newborn bloodspot screening panel to bring us inline (at minimum) with average…
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
The aim of the correspondence was to encourage members of the Oireachtas to attend the event which would be an opportunity to have informal discussions with ASI staff, raise awareness of dementia in general, and meet people with the lived experience of dementia and family carers.
Published name "The Alzheimer Society of Ireland" equals CRO name "THE ALZHEIMER SOCIETY OF IRELAND" (CRO 102700) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
To demonstrate a majority in both Houses of the Oireachtas support the reports full implementation