Rare Diseases Ireland

Lobbying Organisation Rare Diseases Ireland

Date published 21 Jan, 2023

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2023 to 30 Apr, 2023

Specific Details Meeting and follow-up with Minister for Health on rare disease NBS screening, reimbursement of MLD therapy & request for individual at DoH to be designated for update to national rare disease plan

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.

Name of person primarily responsible for lobbying on this activity Vicky McGrath

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.

Meeting (1)

Attended meeting as support for constituent with lived experience of a rare disease, multiple leukocyte dystrophy (MLD), who has first had experience of need for early diagnosis through NBS program and benefits of new drug (Libmeldy) currently being assessed for reimbursement. Also highlighted the need to begin revision of national rare disease plan as promised in prog for government.

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)