Our life-science industry partners

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] 

Support received during 2024

• Alexion
  • Rare Disease UK 2024/25: £15,000
  • Rare Disease Day 2025: £10,000

• Amicus Therapeutics
  • Rare Disease UK 2024/25: £15,000
  • Seeking a rare diagnosis 2024: £5,000
  • Rare Disease Day 2025: £10,000

• Biogen
  • Rare Disease UK 2024/25: £15,000
  • Seeking a rare diagnosis 2024: £5,000

• Chiesi
  • Rare Disease UK 2024/25: £15,000
  • 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

• Ipsen
  • Rare Disease UK 2024/25: £15,000

• Janssen
  • Rare Disease UK 2024/25: £15,000
  • Seeking a rare diagnosis 2024: £5,000

• Johnson & Johnson
  • 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
  • Rare Disease Day 2025: £5,000

• Orchard Therapeutics
  • Core function funding 2024/25: £15,000

• Pfizer
  • Rare Disease UK 2024/25: £15,000
  • Seeking a rare diagnosis 2024: £10,000

• Roche
  • Rare Disease UK 2024/25: £15,000
  • Seeking a rare diagnosis 2024: £10,000
    

• Takeda
  • Rare Disease UK 2024/25: £15,000
  • Seeking a rare diagnosis 2024: £5,000
    

• Vertex
  • Rare Disease UK 2024/25: £15,000
  • Seeking a rare diagnosis 2024: £5,000

Support received during 2023

• 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

Support received during 2022

• 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