Our Disclosures

United Kingdom:

Annually, all payments made by Ipsen to UK healthcare professionals and healthcare organisations during the previous calendar year will be disclosed on a searchable and publicly accessible central database on The Association of the British Pharmaceutical Industry (ABPI) website, known as Disclosure UK, accessed via the following web address:

https://search.disclosureuk.org.uk/.

Ireland:

Annually, all payments made by Ipsen to Irish healthcare professionals and healthcare organisations during the previous calendar year will be disclosed on a publicly accessible central platform. Summary details of how IPHA member companies engage with and support healthcare professionals and healthcare organisations through direct or indirect financial support, or ‘Transfers of Value’, will be made public on www.transferofvalue.ie.

Improving the lives of patients is what drives us at Ipsen. We view our work with patient advocacy groups as a pivotal part of delivering on that ambition.

At Ipsen we pride ourselves on working with patient advocacy groups in a way that reflects our core ethical values and maintains integrity. We strive to build long-term partnerships that offer mutual value, support the independent initiatives of patient advocacy groups and help them achieve their ambitions for patients.

Throughout every collaboration we set clear goals, operate transparently and always support a patient organisation’s need to remain independent. Details of financial support Ipsen has provided to patient groups in the UK and Ireland are set out below.

Sponsorship and financial support of UK and Ireland patient advocacy groups and charities

Ipsen is pleased to have provided sponsorship to the following Patient Organisations & Charities in the UK in 2022:

Organisation	Description of Services Provided	Amount Paid Towards Activities in 2022 (£)
Action Kidney Cancer	Patient testimonial and video of a patient that was treated for kidney cancer	1,200.00
Cancer52	Cancer52 Corporate Event Supporter (Event Sponsor)	10,000.00
Dystonia Society	Sponsorship of patient awards, held annually to recognise those who have gone above and beyond in the dystonia community	5,000.00
FOP Friends	Sponsorship of the FOP Friends Conference and Family Gathering	24,000.00
Gene People	Grant request towards the work of the Gene People’s helpline	4,000.00
Gene People	Corporate Connection Membership Fee to cover partnership in 2022-2023, to include sponsorship of newsletter	10,000.00
Neuroendocrine Cancer UK	Fees toward Speaker at the Ipsen Educational Exchange 2022 Event	423.79
Neuroendocrine Cancer UK	Development of the Ideal Patient Care Pathway for Neuroendocrine Cancer	12,500.00
Neuroendocrine Cancer UK	Development of the Ideal Patient Care Pathway for Neuroendocrine Cancer	6,250.00
Prostate Cancer Research Centre	Prostate Cancer Research patient webinar series	20,400.00
The Stroke Association Ltd	Corporate Sponsorship to a congress organised by The Stroke Association	28,000.00
The Stroke Association Ltd	Sponsorship of the UK Stroke Forum, annual healthcare professional conference held November-December 2022	5,600.00
T/A Kidney Cancer UK	Survey and Kidney Cancer Awareness Week (part 2 of a 3 part grant paid over 3 years)	2,000.00
T/A Kidney Cancer UK	Sponsorship of Kidney Cancer UK Accord Project	2,500.00
		131,873.79

Ipsen is pleased to have provided sponsorship to the following Patient Organisations & Charities in the UK in 2023:

Organisation	Description of Services Provided	Amount Paid Towards Activities in 2023 (£)
Action Kidney Cancer	Together for Kidney Cancer opinion article	225.00
Action Kidney Cancer	Grant request for an educational video series for patients to address the unmet need in kidney cancer patient support	5,000.00
Action Kidney Cancer	Together for Kidney Cancer roundtable meeting	1,105.00
Action Kidney Cancer	Together for Kidney Cancer roundtable meeting	400.00
British Liver Trust	Speaker fees for PBC media advisory board	120.00
Different Strokes	Grant request for updates to resource packs for children of stroke survivors	5,000.00
Different Strokes (Trustees) Limited	Fees for participation at post-stroke spasticity round table	300.00
Different Strokes (Trustees) Limited	Sponsorship of patient educational/networking events	1,000.00
Dystonia Society	Sponsorship of annual conference	5,500.00
Dystonia UK	Grant request to support production of educational patient animation	10,000.00
Footsteps Foundation	Donation: Ipsen in Motion – 10,000 footsteps for Footsteps Foundation, an annual site event to raise funds	3,000.00
FOP Friends	Consultancy fee around Patient Support Program	600.00
FOP Friends	Consultancy fees for review of Talking FOP Guide, a resource for FOP patients	150.00
Kidney Cancer UK – (KCUK)	Fees for participation in workshop on contracts	260.00
Kidney Cancer UK – (KCUK)	Unsolicited grant for patient surveys and Kidney Cancer Awareness Week	2,000.00
National Bobath Cerebral Palsy Cent	Sponsorship of centre Open Day	1,000.00
Neuroendocrine Cancer UK	Sponsorship of production of Neuroendocrine Cancer Patient Pathway	6,250.00
Prostate Cancer Research Centre	Sponsorship of educational partner webinars	8,450.00
Prostate Cancer Research Centre	PCR and Ipsen prostate cancer campaign, PANR	4,200.00
Stroke Association	Grant request for My Stroke Guide, a free online self-management support tool for stroke survivors	7,500.00
Stroke Association	Donation: Ipsen in Motion – a UK-wide initiative to raise funds	7,500.00
Stroke Association	Fees for participation at post-stroke spasticity round table	300.00
Stroke Association (Trading) Ltd	Sponsorship of UK Stroke Forum event	25,000.00
The PBC Foundation	Sponsorship of Bear Facts publication for PBC community	15,000.00
The PBC Foundation	Sponsorship of inaugural PBC International Summit	20,000.00
The PBC Foundation	Speaker fees for symposium at AASLD congress	750.00
The PBC Foundation	Fees for participation at round table and virtual meeting	1,897.40
The PBC Foundation	Fees for participation at Ipsen Patient Centricity Champions CORE Team Summit	1,087.50
The PBC Foundation	Speaker fees symposium at EASL congress	420.10
The PBC Foundation	Speaker fees for Ipsen internal event around living with PBC	760.00
The PBC Foundation	Sponsorship of inaugural two-day patient conference	11,000.00
The Pituitary Foundation	Grant request for an update to library of pituitary disease information booklets to ensure they are accessible and inclusive to all pituitary patients	5,000.00
		150,775.00

Ipsen is pleased to have provided support to the following Patient Organisations and Charities in the UK in 2024:

Organisation	Description of Services Provided	Amount Paid Towards Activities in 2024 (£)
Action Kidney Cancer	Sponsorship for patient and family events, CNS meetings and patient/clinician webinars	12,000
Action Kidney Cancer	Consultancy fee for review of lay language contract templates	360
Action Kidney Cancer	Consultancy fee for RCC Patient Experience Map	560
British Liver Trust	Unsolicited grant for materials for Yellow Alert campaign	5,000
Different Strokes	Sponsorship of Patient Organisation conference	4,000
Different Strokes	Sponsorship of article within information pack on website	2,000
Dystonia UK	Sponsorship for Dystonia UK awards	3,500
Dystonia UK	Speaker agreement for internal meeting	767.39
FOP Friends	Unsolicited grant for 2024 biannual FOP conference and family gathering	5,000
FOP Friends	Sponsorship of annual conference	5,000
Genetic Alliance UK Ltd	Sponsorship of annual meeting	5,000
Genetic Alliance UK Ltd	Sponsorship for industry membership 2024-2025	15,000
Genetic Alliance UK Ltd	Panel Discussion at World Orphan Drug Congress	510
Kidney Cancer UK	Unsolicited grant to update Kidney Cancer UK HCP website aimed at all HCPs working in kidney cancer	5,000
Kidney Cancer UK	Sponsorship for patient survey and Kidney Cancer Awareness week	6,708.33
Kidney Cancer UK	Consultancy fee	680
Kidney Cancer UK	Consultancy fee for RCC Patient Experience Map	760
OUTPatients	Consultancy fee for internal meeting	680
PBC Foundation (UK) Ltd	Sponsorship of annual conference	16,500
PBC Foundation	Consultancy fee for patient testimonial at global internal meeting	225
PBC Foundation	Consultancy for patient testimonial at fireside chat session	375
PBC Foundation	Consultancy fee – behaviours research	510
PBC Foundation	PBC patient activation project ‘Making a difference to PBC patients’	3,230
PBC Foundation	Global Patient Organisation ad board	1,040
Stroke Association	Gold sponsorship package	25,000
Tackle Prostate Cancer	Unsolicited grant for creation of a series of short videos to show The Many Faces of Prostate Cancer	4,850
		124,255.72

 

Ipsen is pleased to have provided sponsorship to the following Patient Organisations & Charities in Ireland in 2022:

Organisation	Country	Types of the Support or Services Provided	Description of the Services Provided	Monetary value of financial support and of invoiced costs (€)	Non-monetary benefit for PO
NET Patient Network	Ireland	Financial Support	Website Sponsorship	2,000.00	N/A
Irish Endocrine Society	Ireland	Financial support	Irish Endocrine Society Annual Meeting	3,500.00	N/A
NET Patient Network	Ireland	Financial support	NET Patient Support	5,000.00	N/A
Irish Heart Foundation	Ireland	Financial Support	The Irish Heart Foundation together with the Northern Ireland Multidisciplinary Association of Stroke Teams (NIMAST) delivered the first all-island stroke conference in 2022	5,000.00
				15,500.00

Ipsen is pleased to have provided sponsorship to the following Patient Organisations & Charities in Ireland in 2023:

Organisation	Country	Types of the Support or Services Provided	Description of Services Provided	Monetary value of financial support and of invoiced costs (€)	Non-monetary benefit for PO
Irish Heart Foundation	Ireland	Financial Support	Stroke Booklets and Donation: Ipsen in Motion	12,500.00	N/A
NET Patient Network	Ireland	Financial Support	Annual National NET Patient Day – Support	6,000.00	N/A
				18,500.00

Ipsen is pleased to have provided support to the following Patient Organisations and Charities in Ireland in 2024:

Organisation	Description of Services Provided	Amount Paid Towards Activities in 2024 (€)
Irish Heart Foundation	Sponsorship of an educational program	6,000

 

Patient Organisation Disclosure Methodological Note 2024

Ipsen engages with members of the UK public including patients, health economists and journalists in line with Industry Codes of Practice and Ipsen’s policy requirements and is committed to make publicly available annually details of the fees provided for the contracted services. These services might include speaking at meetings, assistance with training, writing articles and/or publications, participating in advisory boards, advising on the design etc. of clinical trials, participating in market research where such participation involves remuneration and/or travel.

For the purposes of transparency and clarity, the following declarations include fees provided by Ipsen UK to members of the public based in the UK, paid in 2022.

Payments to Member(s) of the Public:

NUMBER OF INDIVIDUALS	DESCRIPTION OF SUPPORT	CONTRACTED SERVICES PROVIDED
		FEES (£)	OUT OF POCKET EXPENSES (£)
1	Consultancy work for evidence generation and health economics activities	1,202.50	N/A

 

Payments to Patients: 

NUMBER OF RECIPIENTS IN AGGREGATE DISCLOSURE	DESCRIPTION OF SUPPORT	CONTRACTED SERVICES PROVIDED
		FEES (£)	OUT OF POCKET EXPENSES (£)
5	Providing patient testimonial/experience	775.00	N/A
4	Patient speaking at a live event	1,000.00	N/A
2	Patient speaking at a live event	N/A	1,562.17
4	Advisory board	1,362.50	N/A
4	Filming in person	1,300.00	N/A
4	Talking FOP guide	300.00	N/A

 

For the purposes of transparency and clarity, the following declarations include fees provided by Ipsen UK to members of the public based in the UK, paid in 2023.

Payments to Journalists:

NUMBER OF INDIVIDUALS	DESCRIPTION OF SUPPORT	CONTRACTED SERVICES PROVIDED
		FEES (£)	OUT OF POCKET EXPENSES (£)
6	Consultancy during disease related media advisory board	3,600.00	N/A

 

Payments to Patients: 

NUMBER OF RECIPIENTS IN AGGREGATE DISCLOSURE	DESCRIPTION OF SUPPORT	CONTRACTED SERVICES PROVIDED
		FEES (£)	OUT OF POCKET EXPENSES (£)
5	Advisory board	1,781.25	N/A
12	Filming in person	2,575.00	N/A
1	Consultancy and review of materials	112.50	N/A
2	Patient speaking at a live event	487.15	N/A
1	Providing patient testimonial/experience	225.00	N/A

 

For the purposes of transparency and clarity, the following declarations include fees provided by Ipsen UK to members of the public based in the UK, paid in 2024.

Payments to Patients: 

NUMBER OF RECIPIENTS IN AGGREGATE DISCLOSURE	DESCRIPTION OF SUPPORT	CONTRACTED SERVICES PROVIDED
		FEES (£)	OUT OF POCKET EXPENSES (£)
3	Filming in person	770	12.60
5	Providing patient experience/testimonial	1,850	N/A
6	Speaking at a live event	1,877.90	497.56
1	Patient support programme material review & phase IV study advisory board	787.50	N/A
1	Patient feedback on phase III study design	150	N/A