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Online workshop | Successful collaborations: engaging the people that matter

22nd September - 24th September

[image description: photo of a man sat at a table. He is speaking to two women who sit with their backs to the camera]

Findacure is delighted to announce its next online workshop, which will provide support and guidance to patient groups looking to build meaningful connections within the rare disease community.

Taking place in interactive 2-hour sessions across three days, the workshop will delve into forming relationships with three key stakeholder groups: industry, patient groups, and medical professionals.

Attendees will gain the most benefit by attending all three days of the workshop, however you can also sign up for each session independently.

As spaces are limited, we politely request that only one member from each organisation registers to attend. 

11:00am - 1:00pm, Tuesday 22nd September

In the word of rare diseases, delivering a treatment to patients is almost always a major goal. To do this successfully in the majority of cases you will need to engage a pharmaceutical company or biotech. Day one of our workshop will cover some of the basics of these often-daunting interactions.

What will be covered?

 Suitable areas for patient group and industry collaboration
– Assessing if a collaboration or company is right for your organisation
– Making that first contact with industry
– What are industry looking for in a meaningful collaboration?
– The impact of the ABPI code

11:00am - 1:00pm, Wednesday 23rd September

It may seem that collaborations and partnerships with other patient groups and charities should be some of the simplest to establish. However, the sector is littered with examples of similar patient groups with competing aims, strong philosophical differences, or personality clashes. Day two of our workshop will look at some basic principles for forming strong relationships with related organisations.

What will be covered?

– Collaborating within a rare disease
– Collaboration across rare diseases
– Identifying your organisation’s purpose and distinct needs
– Establishing common grounds and goals
– Overcoming challenges
– Collaboration agreements

11:00am - 1:00pm, Thursday 24th September

Finding even a single clinician or researcher with an interest in your rare condition with the desire to focus on it can be transformative to a rare disease patient group’s mission. However, identifying such individuals can prove challenging, and once found, it is important your organisation has a way to engage with them on an ongoing basis. The final day of our workshop will explore ways to identify clinicians, engage others in your rare condition, and develop a simple scientific advisory board to help bring them into the heart of your organisation.

What will be covered?

– Raising awareness among healthcare professionals
– Finding clinicians and researchers interested in your rare disease
– What do clinicians want from a patient group partner?
– Establishing a scientific or medical advisory board
– Conflicts of interest

The workshop will be hosted on Zoom and joining details will be sent to attendees upon registration. When registering, please ensure you select a ticket for each session you wish to attend. 

Findacure would like to thank The National Lottery Community Fund for providing funding for The Empowerment Programme.


Mary Rose Roberts