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Lobbying returns
Returns filed on the Register of Lobbying, newest first, with the policy area and intended results as the lobbyist published them.
Establish working relationship with officials at Department of Health responsible for rare disease policy. ::Share challenges of living with a rare disease in Ireland.::Discuss opportunities for leadership and greater integration across EU to address needs of people living…
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 Lobbying2023-01-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Endorsement of Czech EU Presidency’s Call to Action on rare diseases at EPSCO Council 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 Lobbying2023-01-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Establishment of cross party rare disease group at the Oireachtas.::Designation of RDI to provide secretariat support for cross party rare disease group at the Oireachtas.
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 Lobbying2023-01-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Attend 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 Lobbying2023-01-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Speed up of the process for adding tests to the national newborn bloodspot screening panel.::Meeting for patient representative and relevant clinician with drugs reimbursement group to discuss reimbursement of Libmeldy for MLD.::Initiate revision of national rare diseases plan.
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 Lobbying2022-09-20
Lobbying return by Rare Diseases Ireland
Health
Intended results
Passage of bill into legislation::Public accountability for work of National Screening Advisory Committee::Expansion of Newborn Bloodspot Screening
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 Lobbying2022-09-20
Lobbying return by Rare Diseases Ireland
Health
Intended results
Implementation of the rare disease commitments in the 2020 programme for government::Support for newborn bloodspot screening as promised in the 2020 programme for government::Allocation of resources to care through European Reference Networks and new care pathways for those…
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 Lobbying2022-09-20
Lobbying return by Rare Diseases Ireland
Health
Intended results
Establishment of cross-party rare diseases group
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 Lobbying2022-05-04
Lobbying return by Rare Diseases Ireland
Health
Intended results
Support from Irish delegation at EPSCO Council Meeting for coordination of rare disease care, research and innovation across 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 Lobbying2022-05-04
Lobbying return by Rare Diseases Ireland
Health
Intended results
Financial support for ERN integration into HSE::Commitment to fund RD Partnership research collaboration
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 Lobbying2022-05-04
Lobbying return by Rare Diseases Ireland
Health
Intended results
Amendment to existing legislation to accommodate reimbursement of 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 Lobbying2022-05-04
Lobbying return by Rare Diseases Ireland
Health
Intended results
Onward transmission to Minister for Health::Establishment of cross-party group for 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 Lobbying2022-01-17
Lobbying return by Rare Diseases Ireland
Health
Intended results
Ireland's support for adoption of IN Resolution
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 Lobbying2022-01-17
Lobbying return by Rare Diseases Ireland
Health
Intended results
Enabling timely and equitable access to 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 Lobbying2022-01-17
Lobbying return by Rare Diseases Ireland
Health
Intended results
Meeting with Health Committee to discuss rare disease policy
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.