Rare Diseases Ireland

Lobbying Organisation Rare Diseases Ireland

Date published 20 Sep, 2022

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2022 to 31 Aug, 2022

Specific Details Commentary re Health Committee meeting of 22 Jun

Intended results Implementation of the rare disease commitments in the 2020 programme for government Support for newborn bloodspot screening as promised in the 2020 programme for government Allocation of resources to care through European Reference Networks and new care pathways for those living with rare diseases Establishment of Individual Health Identifiers and registries for those living with rare diseases

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.

Email (1)

Document detailing gaps in policy and services for rare disease community in preparation for Joint Committee on Health of Jun 22 discussing improving the lives of those affected by rare diseases and their families

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.

David Cullinane TD (Dáil Éireann, the Oireachtas)

Colm Burke TD (Dáil Éireann, the Oireachtas)

Cathal Crowe TD (Dáil Éireann, the Oireachtas)

Seán Crowe TD (Dáil Éireann, the Oireachtas)

Bernard Durkan TD (Dáil Éireann, the Oireachtas)

Neasa Hourigan TD (Dáil Éireann, the Oireachtas)

Gino Kenny TD (Dáil Éireann, the Oireachtas)

John Lahart TD (Dáil Éireann, the Oireachtas)

Róisín Shorthall TD (Dáil Éireann, the Oireachtas)

Frances Black Senator (Seanad)

Lorraine Clifford-Lee Senator (Seanad)

Martin Conway Senator (Seanad)

Seán Kyne Senator (Seanad)

Pádraig O'Sullivan TD (Dáil Éireann, the Oireachtas)