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Declared

CRO company · CRO company 140743

RARE DISEASES IRELAND

Company number
140743
Status
Normal
Type
CLG-Company Limited by Guarantee (licenced company)
Registered
1989-02-23
Registered office
CARMICHAEL HOUSE, NORTH BRUNSWICK STREET, DUBLIN 7
Last annual return
2025-09-30
0
Awards
Every award names several suppliers
None
Sole-supplier value
0
Shared awards
0
Declared by politicians

Directors, secretaries and shareholders are not in CRO's open data. CRO sells officer information through CORE; it is not shown here rather than guessed.

Lobbying returns

Returns filed on the Register of Lobbying, newest first, with the policy area and intended results as the lobbyist published them.

Register of Lobbying2026-09-21

Lobbying return by Rare Diseases Ireland

Health
Intended results

Initiate development of an early access scheme for orphan medicines

Derived link · Matched by exact company name

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.

Register of Lobbying2026-09-21

Lobbying return by Rare Diseases Ireland

Health
Intended results

Increase the scope of HIQA review of screening programs to take in wider screening programs, in particular screening in pregnancy.

Derived link · Matched by exact company name

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.

Register of Lobbying2026-09-21

Lobbying return by Rare Diseases Ireland

Health
Intended results

Attendance in person by Minister or DoH delegate at Prague meeting.

Derived link · Matched by exact company name

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.

Register of Lobbying2026-09-21

Lobbying return by Rare Diseases Ireland

Health
Intended results

Minister to agree to speak at associated EU Presidency event on Nov 13

Derived link · Matched by exact company name

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.

Register of Lobbying2026-09-21

Lobbying return by Rare Diseases Ireland

Health
Intended results

Attendance at upcoming Associated EU Presidency on Rare Diseases on Nov 13

Derived link · Matched by exact company name

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.

Register of Lobbying2026-09-21

Lobbying return by Rare Diseases Ireland

Health
Intended results

Reimbursement of Friedriech's ataxia drug Skyclarys

Derived link · Matched by exact company name

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.

Register of Lobbying2026-04-30

Lobbying return by Rare Diseases Ireland

Health
Intended results

Support from Ireland for proposal to reinstate the Operating Grants for Health NGOs at the EU

Derived link · Matched by exact company name

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.

Register of Lobbying2026-04-30

Lobbying return by Rare Diseases Ireland

Health
Intended results

Support to host a rare disease themed Associated Presidency Event as part of Ireland's Presidency of the Council of the European Union 2026.

Derived link · Matched by exact company name

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.

Register of Lobbying2026-01-21

Lobbying return by Rare Diseases Ireland

Health
Intended results

Acknowledgement of the difficulties getting access to orphan medicines and revision of policies and systems to reduce and eliminate the gaps and delays in the system

Derived link · Matched by exact company name

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.

Register of Lobbying2026-01-21

Lobbying return by Rare Diseases Ireland

Health
Intended results

Commence implementation of National Rare Disease Strategy and establish an Implementation Oversight group with patients/advocates included

Derived link · Matched by exact company name

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.

Register of Lobbying2026-01-21

Lobbying return by Rare Diseases Ireland

Health
Intended results

Commitment to highlight rare diseases during the upcoming EU Presidency by hosting an official event on Rare Diseases.

Derived link · Matched by exact company name

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.

Register of Lobbying2025-09-20

Lobbying return by Rare Diseases Ireland

Health
Intended results

Inclusion of rare diseases as a priority for Ireland to showcase during Ireland's EU Presidency in 2026.

Derived link · Matched by exact company name

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.

Register of Lobbying2025-09-20

Lobbying return by Rare Diseases Ireland

Health
Intended results

Inclusion of rare disease topics on schedule for Health Committee meetings.

Derived link · Matched by exact company name

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.

Register of Lobbying2025-05-15

Lobbying return by Rare Diseases Ireland

Health
Intended results

Understanding of the rare disease landscape and the priorities of people living with rare diseases.

Derived link · Matched by exact company name

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.

Register of Lobbying2025-05-15

Lobbying return by Rare Diseases Ireland

Health
Intended results

Ministerial support for people living with rare diseases

Derived link · Matched by exact company name

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.