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What is a Collaboration?

A collaboration is two or more organisations working together to complete a task or achieve a goal. This guide will discuss how to create successful collaborations amongst patient organisations, in order to achieve a common goal for the benefit of patients living with rare diseases.

Patient Groups and Charities

In this guide, the term ‘patient organisation’ is used to refer to a group or a charity representing a specific patient community. A charity is an organisation that has gone through a legal procedure to be registered as a charity.

Here we will discuss collaborations between two or more patient organisations who are likely to share goals and have common interests. This guide will explain how the patient organisations involved in a collaboration can all benefit from such interactions.

Benefits and Challenges of Collaboration


There are several reasons why a collaboration may be of benefit to patient organisations:

  • Working towards a shared goal: In the rare diseases field, there are often multiple organisations working towards similar goals for the same disease. Collaborating can combine these efforts through working towards a shared goal.
  • Making the most of strengths and resources: Collaboration allows organisations to make the most of each other’s strengths, resources and insights.
  • Generating new ideas: A huge amount can be learnt from working with new individuals or a new team; sharing knowledge, perspectives and previous experiences can help spark new ideas for projects.
  • Unified voice for the patient community: A unified voice for the patient community helps to build confidence in the organisations involved and may reduce divisions in the community so that patients can access support from one platform with consistent support and advice.
  • Legitimacy and a unified voice for external stakeholders: Combining knowledge and expertise can increase the legitimacy and authority of the collaboration. This can be beneficial when engaging with stakeholders, particularly in gaining funding and strengthening the voice of the rare disease community in key discussions and decision-making processes.

A collaboration can enable patient organisations to make a bigger impact than they may have done on their own, such as patient registries and/or wider clinician engagement. Examples of successful collaborations (Rett Disorders Alliance, Lysosomal Storage Disorders (LSD) Collaborative, International Niemann-Pick Disease Alliance) will be shared towards the end of this guide.


Starting a collaboration in the rare disease field can present some challenges. Patient organisations tend to have extremely limited resources – few people, little funding, and limited time. Furthermore, those involved often have a strong emotional investment in the cause, having been personally affected, which can lead to passionate view and opinions. Whilst this is entirely understandable, emotional investment and limited resources can increase the likelihood of clashes in collaborative projects, resulting in challenges such as:

  • Adjusting to a new work environment: Someone who is used to working in a small team may find it difficult to adjust to working in a bigger team, a different environment, or with people that they don’t know very well.
  • Conflict of ideas: There may be differences in opinions between organisations collaborating in the same space, in terms of their usual processes and working routines, as well as surrounding plans or ideas.
  • Accessing funding: As rare diseases affect small patient populations, it is often difficult to attract and access funding to put towards collaborations and new initiatives.
  • Sensitive topics: Given the challenges faced by the rare disease community, discussions surrounding sensitive topics can be difficult, highlighting the need to communicate effectively.
  • Navigating new relationships: It can be challenging to navigate new relationships between organisations and to understand how each subgroup will operate within the collaboration.

This guide aims to help you find ways to overcome or limit these challenges whilst maximising the benefits of collaboration.