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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.
Lobbying return by Health Research Charities Ireland
Health
Intended results
Early engagement with patients and the public, to build trust and to ensure that their needs from genomics will be met.::Urgent implementation of unique health identifiers and electronic health records.::Adoption of carefully considered approaches to study participant consent…
Derived link · Matched by name with added legal form
Published name "Health Research Charities Ireland" has no legal form. "HEALTH RESEARCH CHARITIES IRELAND COMPANY LIMITED BY GUARANTEE" (CRO 377794) 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.
Register of Lobbying2021-05-23
Lobbying return by Health Research Charities Ireland
Health
Intended results
The publishing of an updated National Rare Diseases Plan.::Appointment of a new DOH liaison person to replace Dr Alan Smith and the reconvening of quarterly meetings with the Rare Disease Taskforce on the implementation of the Plan::A national strategy on patient registries::The…
Derived link · Matched by name with added legal form
Published name "Health Research Charities Ireland" has no legal form. "HEALTH RESEARCH CHARITIES IRELAND COMPANY LIMITED BY GUARANTEE" (CRO 377794) 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.
Register of Lobbying2021-05-23
Lobbying return by Health Research Charities Ireland
Health
Intended results
To ensure that Ireland is regularly in the top 7 of countries in the EU for access to rare disease drugs according to the annual W.A.I.T Reports::Additional dedicated funding for innovative rare disease drug therapies including from further funding saved through a new IPHA…
Derived link · Matched by name with added legal form
Published name "Health Research Charities Ireland" has no legal form. "HEALTH RESEARCH CHARITIES IRELAND COMPANY LIMITED BY GUARANTEE" (CRO 377794) 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.
Register of Lobbying2021-05-23
Lobbying return by Health Research Charities Ireland
Health
Intended results
For Ireland to be in the top 10 EU countries in respect of numbers of diseases screened (at least 20 conditions). This target to be reached by 2023.::The Rare Disease Task Force to be approached to nominate 1 patient/patient group representative to the National Screening…
Derived link · Matched by name with added legal form
Published name "Health Research Charities Ireland" has no legal form. "HEALTH RESEARCH CHARITIES IRELAND COMPANY LIMITED BY GUARANTEE" (CRO 377794) 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.
Register of Lobbying2021-05-23
Lobbying return by Health Research Charities Ireland
Health
Intended results
Rare Disease Research Strategy to be developed including maximising potential national and EU funding as part of the updating of the National Rare Disease Plan::An Initiative to draw down additional rare disease health research funding from the EU::Urgent passage of Research…
Derived link · Matched by name with added legal form
Published name "Health Research Charities Ireland" has no legal form. "HEALTH RESEARCH CHARITIES IRELAND COMPANY LIMITED BY GUARANTEE" (CRO 377794) 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.
Register of Lobbying2021-05-23
Lobbying return by Health Research Charities Ireland
Health
Intended results
Increased support for clinical research::Development of a national genomics strategy::PPI integrated into health research policy
Derived link · Matched by name with added legal form
Published name "Health Research Charities Ireland" has no legal form. "HEALTH RESEARCH CHARITIES IRELAND COMPANY LIMITED BY GUARANTEE" (CRO 377794) 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.