What comes to mind when you hear ‘partner with industry’?
Are you… Curious? Optimistic? Cautious? Unsure?
For rare disease patient groups, industry can be a vital partner in driving progress.
Companies develop treatments and invest in the research the community needs. Beyond research, they can also help groups raise awareness, influence policy and achieve their wider advocacy goals.
For industry, patient groups offer a direct line to the people living with the condition. Working closely with them keeps research focused on what patients actually want. These partnerships add real value on both sides.
This workshop brings patient groups, industry and other stakeholders together to talk openly about the challenges and the opportunities.
Why join our workshop?
For a small patient group, working with industry can be daunting. There is a lot to navigate, from grant portals and contracting to the ABPI Code of Practice, and it is easy to feel out of your depth.
Yet patient groups know their condition and their community better than anyone. In rare disease, where data and insight are hard to come by, that knowledge is exactly what industry needs.
Both sides have a lot to gain, and a lot to learn from each other.
We’ll look at:
- The different ways patient groups can work with industry, and where to start
- How to build trust while staying compliant and managing conflicts of interest
- What a good partnership looks like, and how both sides can set realistic expectations
What to expect:
- A case study from Sue Farrington the Chief Executive of Scleroderma and Raynaud’s UK and her partner at Boehringer Ingelheim discussing their long-standing partnership. Sharing what they achieved, what they learned and the pitfalls they met along the way.
- Talks from industry on what they look for in a patient group partner, their priorities and the different ways groups can work with them
- A presentation from Dr Amit Aggarwal from the ABPI on what the Code means in practice, and the work they are doing to make it more accessible.
- A panel discussion on how industry partnerships have changed over time, the current landscape and exploring what it takes to build trust
- Time to share your experiences and challenges with other patient groups and stakeholders in an open, supportive environment.
You’ll leave with a clearer picture of how industry partnerships work, practical lessons from groups who have done it, and new connections across the rare disease community.
Meet the speakers
Sue Farrington
Chief Executive
Scleroderma and Raynaud’s UK
Dr Amit Aggarwal
Executive Director for Medical Affairs and Strategic Partnerships
ABPI
More speaker announcements coming soon!
Frequently asked questions
Can I bring a carer with me?
Do you cover travel expenses?
Beacon will reimburse travel expenses for rare disease patients, carers, patient groups and charities, up to the total value of £100 per person. If your travel is likely to exceed this amount, please contact projects@rarebeacon.org ahead of the event so we can discuss whether further reimbursement will be possible.
All expenses, other than mileage, must be accompanied by valid receipts.
For further information on our expenses policy, please click here.
Where is the workshop?
This workshop will be held at the Royal Institution, London.
The closest underground stations are:
Green Park – 5 mins walk (Jubilee, Victoria and Piccadilly lines)
Piccadilly Circus – 10 mins walk (Piccadilly and Bakerloo lines)
Oxford Circus – 10 mins walk (Victoria, Central and Bakerloo lines)
Is the venue accessible?
If you have any accessibility requirements, please note these on your registration form so we can ensure your needs are met.
Will lunch be provided?
Lunch and refreshments will be provided throughout the day.
If you have dietary requirements, please let us know in the registration form.
