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In-person workshop | Building positive partnerships between patient groups and industry

21st September, 2022 at 10:00 am - 4:00 pm BST

In-person workshop: Building positive partnerships between patient groups and industry

10:00 – 16:00, 21st September 2022, The Royal Institution, London

We are delighted to announce our next in-person workshop focusing on how to build positive and equitable partnerships between patient groups and the life sciences industry

Collaborating with the pharmaceutical industry is often a key aim for rare disease patient groups looking to get involved in research or find funding partnerships.

For these collaborations to be successful, it’s essential that both parties understand each other’s needs and expectations.

During this workshop, we will hear from industry and patient group representatives who will discuss their successful projects, what they are looking for from collaboration, current barriers to partnerships and what they want to see in the future.

Register for your free ticket here.

What to expect 

Presentations from Pharma, CRO and Patient Group representatives

Clear examples and guidance on how to make collaborations between patient groups and industry a success

Interactive activities and plenty of time to network with fellow attendees and speakers  

A panel session with stakeholders from across the rare disease community where attendees will have the opportunity to ask questions

Talks that highlight the importance of collaboration between patient groups and the life sciences industry

Complimentary lunch and refreshments throughout

Meet the speakers!

Naomi Litchfield

Global Patient Advocacy Lead

Bionical Emas

Pharma representative


Speaker to be announced soon!

Toni A Mathieson

Chief Executive

Niemann-Pick UK

More speakers to be announced soon! 

Watch this space as we will be announcing more workshop speakers and panellists very soon, including speakers from a CRO and rare disease Patient Group!

Frequently asked questions

Where is the workshop and how do I get there?

The workshop is taking place at The Royal Institution of Great Britain, 21 Albemarle Street, London, W1S 4BS.

Nearest tube stations:

  • Green Park (step-free access)
  • Piccadilly Circus
  • Oxford Circus


Will food and drink be provided?


Refreshments will be available throughout the day including tea, coffee and complimentary lunch.

Meat, fish and vegetarian options will be included as standard. Additional dietary needs can be met upon request. You can submit your catering requirements during the registration process. 


Do you cover expenses?

Beacon will reimburse travel expenses for rare disease patients, carers, patient groups and charities, up to the total value of £75.00 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.


Is the venue accessible?

The venue has step-free access via a lift and/or ramp and accessible toilets onsite.

If you have any accessibility requirements, please note these on your registration form so we can ensure your needs are met.

To discuss any additional accessibility measures we can provide, please get in touch with our team at projects@rarebeacon.org.


Will you have COVID-19 protocols in place?

The situation regarding COVID-19 is constantly changing. Our team will monitor this and determine the necessary protocols closer to the date of the workshop.

In any event, attendees can expect:

  • Hand sanitisers and anti-bacterial wipes throughout the workshop
  • Facemasks for any delegate who wishes to wear one*
  • A traffic light system for lanyards for delegates to express their level of comfort regarding social distancing
  • Socially distanced seating in specific areas

*Please note: given the current guidelines, delegates will be free to choose whether they wish to wear a face mask or not.


With thanks to our sponsors

Ipsen’s vision is to be a leading global mid-size biopharmaceutical company, with a focus on transformative medicines in three key therapeutic areas: oncology, rare disease and neuroscience.



21st September, 2022
10:00 am - 4:00 pm BST
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