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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 SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG
Health
Intended results
Expand access to drugs currently available to under 18's Suffering from spinal muscular atrophy to the small number of adults who have thus far been excluded.
Derived link · Matched by exact company name
Published name "SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG" equals CRO name "SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION COMPANY LIMITED BY GUARANTEE" (CRO 656603) 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 Lobbying2024-08-30
Lobbying return by SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG
Health
Intended results
following the approval of SCID and SMA for inclusion in the newborn screening programme, we continue to campaign for implementation.
Derived link · Matched by exact company name
Published name "SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG" equals CRO name "SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION COMPANY LIMITED BY GUARANTEE" (CRO 656603) 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 Lobbying2024-05-01
Lobbying return by SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG
Health
Intended results
Swift implementation of SMA and SCID in NBS bloodspot screening programme
Derived link · Matched by exact company name
Published name "SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG" equals CRO name "SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION COMPANY LIMITED BY GUARANTEE" (CRO 656603) 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 Lobbying2024-01-13
Lobbying return by SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG
Health
Intended results
to see spinal muscular atrophy added to newborn screening heel prick test in Ireland
Derived link · Matched by exact company name
Published name "SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG" equals CRO name "SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION COMPANY LIMITED BY GUARANTEE" (CRO 656603) 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.