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 2021:

Organisation	Description of Services Provided	Amount Paid Towards Activities in 2021 (£)
AMEND – Association for Multiple Endocrine Neoplasia Disorders	Unsolicited grant for annual patient information day and patient experience awareness films	6,880.00
British Liver Trust	Unsolicited grant for Liver Cancer Awareness month (2021) and Education project	10,600.00
Cancer52	Unsolicited grant for Cancer52 showcase video project	11,990.00
Different Strokes	Sponsorship and input of a double-page article within Different Strokes newsletter	900.00
Dystonia UK	Unsolicited grant for production of a series of animations to explain Dystonia in childhood	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	Unsolicited grant for FOP Awareness and Explainer Videos	20,000.00
Kidney Cancer UK	Sponsorship of Kidney Cancer UK Accord Project	15,000.00
Kidney Cancer UK	Unsolicited grant for patient surveys and Kidney Cancer Awareness Week run in 2022	2,000.00
Kidney Cancer Support Network (now Action Kidney Cancer)	Unsolicited grant for community outreach programme for kidney cancer patients	15,000.00
Kidney Cancer Support Network (now Action Kidney Cancer)	Online Presentation by Karen McNee at Scottish Oncology Meeting (19th May 2021)	333.50
Neuroendocrine Cancer UK	Unsolicited grant to support both the Patient Information Factsheet and Bridging the Gap Campaign	15,776.00
Pancreatic Cancer Action	Patient Organisation consultancy fee – collaborating with patient organisations workshop. Ipsen UK internal corporate affairs workshop to generate insight and understanding on best practice when working with Patient Organisations	200.00
Pelican Cancer Foundation	Sponsorship to support Kent and Hampshire Hospitals NET Centre of Excellence meeting	7,500.00
Prostate Cancer Research	Consulting fee for review of CPRD CLIN-52014-451 study protocol	750.00
The Pituitary Foundation	Unsolicited grant for a 5-month digital programme, sponsorship of regional events, provision of a new laptop for Communications Officer.	4,800.00
Supporting Sick New-born and their Parents	Donation towards/sponsorship of the runners representing Ipsen Milton Park R&D Hub for the Ipsen in Motion programme (Social Responsibility initiative)	1,500.00
		126,149.50

Ipsen is pleased to have collaborated with the following Patient Organisations & Charities in the UK in 2021: 

Organisation	Description of Collaboration	Cost of activity in 2021 (£)
Prostate Cancer Research (PCR) and Tackle Prostate Cancer	“Let’s talk about the Hard Things” Campaign A collaborative social media/media campaign to raise awareness about living with side effects of prostate cancer treatment. Ipsen has fully funded this campaign and paid for the following: Creative agency fees (including filming of interviews with patients; market research) Media fees (including payment of spokespeople) Project management fees No payments were made to either PCR or Tackle Prostate Cancer as part of this project. Read more about this project here: Let’s Talk About The Hard Things – Prostate Cancer Research (prostate-cancer-research.org.uk)	70,200.00

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 sponsorship to the following Patient Organisations & Charities in Ireland in 2021:

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
Beaumont Hospital	Ireland	Therapeutic support	Unsolicited request for handheld EMG device and pictorial atlas of Botulinum toxin	3,533	Handheld EMG device and pictorial atlas of Botulinum toxin
Irish Heart Foundation Stroke Conference	Ireland	Financial support	Sponsorship – unsolicited request	3,000	N/A
NET Patient Network	Ireland	Financial support	Sponsorship – unsolicited request	1,500	N/A
				8,033.00

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 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