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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
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 Lobbying2025-08-29
Lobbying return by SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG
Health
Intended results
Individuals with SMA who were <18yo when the medicine was approved continue to receive treatment into adulthood. However, their peers who were over 18 are excluded from treatment. This injustice continues, With a small number of adults excluded from treatment. We are campaigning…
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 Lobbying2025-05-03
Lobbying return by SPINAL MUSCULAR ATROPHY IRELAND FOUNDATION CLG
Health
Intended results
To get access to SMA medicine for the 20 or so adults currently excluded on the grounds that they were over 18 when the medicine was approved.
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.