Muscular Dystrophy Society of Ireland GLC (Muscular Dystrophy Ireland)

Lobbying Organisation Muscular Dystrophy Society of Ireland GLC

Date published 21 May, 2021

Relevant Matter Matters involving public funds

Public Policy Area Health

Period 1 Jan, 2021 to 30 Apr, 2021

Specific Details Calling for promises in the Programme for Government to be fulfilled and for the delivery of a range of measures relating to rare diseases.

Intended results The implementation of the commitments relating to Rare Disease in the Programme for Government, 2020 Improved access to new and innovative therapies for those with rare diseases Expansion of the New Born Screening Programme 4 Develop Rare Disease Research Strategy including maximising potential of national and EU funding as part of the updating of the National Rare Disease Plan Urgent passage of Research Ethics Bill

Name of person primarily responsible for lobbying on this activity Elaine Mc Donnell

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) No

Did you manage or direct a grassroots campaign? No

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Submission (1)

A submission was made by Rare Disease taskforce (RDTF), which brings together patient groups from 3 national networks, (IPPOSI, Health Research Charities Ireland, Rare Disease Ireland) . The purpose was to provide an agenda with explanatory notes in preparation for a meeting the Minister for Health, Stephen Donnelly TD on the 26th February, 2021.

Meeting (1)

A meeting between representatives of the Rare Disease Taskforce and Minister for Health, Stephen Donnelly, was held on 26th February 2021to discuss the above.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Stephen Donnelly Minister (Department of Health)