Our partnerships with the life-sciences industry allow us to deliver vital projects supporting people living with genetic and rare conditions.
Our position on working with the pharmaceutical sector
Collaborations between charities and support groups representing people living with rare, genetic and undiagnosed conditions and the life-sciences industry can deliver significant benefits by:
- Helping industry partners to understand what matters most for people living with rare, genetic and undiagnosed conditions and their families;
- Improving how existing screening technologies, diagnostic tests, treatments and therapies are used to improve health and quality of life;
- Speeding up the development of new screening technologies, diagnostic tests, treatments and therapies.
For more information on how and why we work with the life-sciences industry, read our Policy on working with the life-sciences industry.
Our current policy was approved in 2023 and it commits us to publish an overview of the funding received from the life-sciences industry in our Annual Report and Accounts each year. Overviews of funding received during the past two financial years are published here for transparency.
If you are a life-sciences company interested in supporting our work, please contact our Corporate Partnerships Manager Justin Khodaiji at [email protected]
- Amicus Therapeutics
- Rare Disease UK 2024/25: £15,000
- Seeking a rare diagnosis 2024: £5,000
- BioCryst Pharmaceuticals
- Rare Disease UK 2024/25: £15,000
- Seeking a rare diagnosis 2024: £5,000
- Chiesi
- Seeking a rare diagnosis 2024: £5,000
- How decisions are made in Scotland 2024: £5,000
- Fee for service projet 1: £6,000
- Fee for service project 2: £7,200
- Janssen
- Rare Disease UK 2024/25: £15,000
- Seeking a rare diagnosis 2024: £5,000
- Kyowa Kirin
- Rare Disease UK 2024/25: £15,000
- Seeking a rare diagnosis 2024: £5,000
- How decisions are made in Scotland 2024: £5,000
- Novartis
- Rare Disease UK 2024/25: £15,000
- Seeking a rare diagnosis 2024: £5,000
- How decisions are made in Scotland 2024: £5,000
- Orchard Therapeutics
- Core function funding 2024/25: £15,000
- Pfizer
- Seeking a rare diagnosis 2024: £10,000
- PTC Therapeutics
- Rare Disease UK 2024/25: £15,000
- Roche
- Seeking a rare diagnosis 2024: £10,000
- Takeda
- Rare Disease UK 2024/25: £15,000
- Vertex
- Rare Disease UK 2024/25: £15,000
- Seeking a rare diagnosis 2024: £10,000
- Alexion Pharmaceuticals
-
- Rare Disease UK 2023/24: £12,800
- Rare Disease Day 2024: £15,000
- Amicus Therapeutics
-
- Rare Disease UK 2023/24: £12,800
- Rare Disease Day 2024: £10,000
- Core function funding 2023: £5,000
- BioCryst Pharmaceuticals
-
- Rare Disease UK 2023/24: £12,800
- Chiesi
-
- Rare Disease UK 2023/24: £12,800
- Rare Disease Day 2024: £5,000
- Egetis
-
- Rare Disease UK 2023/24: £6,400
- Ipsen
-
- Rare Disease Day 2024: £5,000
- Janssen
-
- Rare Disease UK 2023/24: £12,800
- Kyowa Kirin
-
- Rare Disease UK 2023/24: £12,800
- Core function funding 2023: £3,000
- LifeArc
-
- Rare Disease Day 2024: £7,000
- Novartis
-
- Rare Disease UK 2023/24: £12,800
- Rare Disease Day 2024: £10,000
- Orchard Therapeutics
-
- Core function funding 2023/24: £15,000
- Pfizer
-
- Rare Disease UK 2023/24: £12,800
- Rare Disease Day 2024: £10,000
- PTC Therapeutics
-
- Rare Disease UK 2023/24: £12,800
- Roche
-
- Rare Disease UK 2023/24: £12,800
- Rare Disease Day 2024: £10,000
- Core function funding 2023: £5,000
- Takeda
-
- Rare Disease Day 2024: £10,000
- UCB
-
- Rare Disease UK 2023/24: £12,800
- Ultragenyx
-
- Rare Disease UK 2023/24: £12,800
- Rare Disease Day 2024: £5,000
- Vertex
-
- Rare Disease UK 2023/24: £12,800
- Rare Disease Day 2024: £10,000
- Alexion Pharmaceuticals
-
- Rare Disease UK 2022/23: £12,800
- Rare Disease Day 2023: £10,000
- Signposting to support 2023: £5,000
- Albireo Pharmaceuticals
-
- Rare Disease UK 2022/23: £12,800
- Amicus Therapeutics
-
- Rare Disease UK 2022/23: £12,800
- Rare Disease Day 2023: £7,000
- Signposting to support 2023: £4,000
- BioCryst Pharmaceuticals
-
- Rare Disease UK 2022/23: £9,600
- Signposting to support 2023: £5,000
- Biogen
-
- Rare Disease UK 2022/23: £12,800
- Rare Disease Day 2023: £5,000
- Chiesi
-
- Rare Disease UK 2022/23: £12,800
- Rare Disease Day 2023: £5,000
- Signposting to support 2023: £5,000
- CSL Behring
-
- Rare Disease UK 2022/23: £12,800
- Gilead
-
- Rare Disease UK 2022/23: £12,800
- Signposting to support 2023: £3,000
- Incyte
-
- Rare Disease UK 2022/23: £12,800
- Signposting to support 2023: £5,000
- Janssen
-
- Rare Disease UK 2022/23: £12,800
- Signposting to support 2023: £5,000
- Kyowa Kirin
-
- Rare Disease UK 2022/23: £12,800
- Rare Disease Day 2023: £10,000
- Signposting to support 2023: £5,000
- Novartis
-
- Rare Disease UK 2022/23: £12,800
- Rare Disease Day 2023: £10,000
- Orchard Therapeutics
-
- Core function funding 2022/23: £15,000
- Pfizer
-
- Rare Disease UK 2022/23: £12,800
- Rare Disease Day 2023: £10,000
- Signposting to support 2023: £10,000
- Rare Disease Day 2023: £10,000
- PTC Therapeutics
-
- Rare Disease UK 2022/23: £12,800
- Rare Disease Day 2023: £10,000
- Signposting to support 2023: £5,000
- Recordati / EUSA
-
- Rare Disease UK 2022/23: £12,800
- Signposting to support 2023: £5,000
- Roche
-
- Rare Disease UK 2022/23: £12,800
- Sanofi
-
- Rare Disease Day 2023: £10,000
- Signposting to support CRM 2023: £5,000
- Takeda
-
- Rare Disease Day 2023: £10,000
- Signposting to support 2023: £5,000
- UCB
-
- Rare Disease UK 2022/23: £12,800
- Signposting to support CRM 2023: £5,000
- Vertex
-
- Rare Disease UK 2022/23: £12,800
- Rare Disease Day 2023: £10,000
- Signposting to support CRM 2023: £2,200