Novartis Gene Therapies Gmbh (Novartis Gene Therapies)

Lobbying Organisation Novartis Gene Therapies Gmbh

Date published 20 May, 2022

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2022 to 30 Apr, 2022

Specific Details Rare disease policy and the need for rapid, timely diagnosis of a rare disease when there are approved, available, effective treatments

Intended results Clear, transparent, timely process to assess applications to add diseases to the national newborn heel prick test programme.

Name of person primarily responsible for lobbying on this activity Michelle Levene

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)

Email to MEP Frances Fitzgerald following the webinar that MEP Fitzgerald hosted on "Rare Diseases in Ireland and the EU" on April 1st 2022. Regarding the heel prick test for treatable rare diseases, you mentioned the disparity between countries in Europe from 2 to 49 diseases in the national heel prick panels. Ireland ranks 20/28 countries with only 8 diseases included in the national heel prick panel.

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.

Frances Fitzgerald MEP (European Parliament)