Social media executive volunteer roles

Beacon for Rare Diseases hosts The Resources Hub, a 100% free and accessible e-learning platform created to support the rare disease community, including:

• Patient groups, patients and families
• Researchers and life science professionals
• Rare disease advocates

The Resources Hub brings together over 100 free resources, including written courses, video guides, webinars and recordings from events and conferences. These resources are designed to support people at every stage of their rare disease journey, whether they are just getting started or are part of a well-established organisation.

We are incredibly proud of the breadth and quality of what’s available on the Hub. However, much of our long-standing content is under-promoted, meaning that people don’t always find the right resource at the right time.

“The Resources Hub provides invaluable resources to help patient group leaders navigate challenges such as caring responsibilities, health issues, and employment.”

“It breaks down topics relevant to the rare community in a way that's easy to digest and empowering to take action!”

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About the role

We are looking for a social media volunteer to help us shine a light on the wealth of content already available within the Resources Hub.

In this role, you will:

• Spend time exploring our existing Resources Hub content
• Write 1–3 social media posts per resource, tailored for different platforms
• Help us build a reusable library of social media posts that we can draw on to promote resources when they are most relevant

This role is about helping people discover support that already exists, making it easier for patient groups and advocates to find information that could make a real difference to their work.

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Who this role would suit

This is a specific, project-based placement and would suit someone who already has experience in communications, social media or content creation.

You’ll be someone who:

• Enjoys writing clear, engaging social media copy
• Understands how to adapt messaging across different platforms
• Is comfortable working independently and managing their own time
• Can take guidance on tone and branding and run with it

While we don’t have capacity to provide training, you won’t be left on your own. We will:

• Provide clear direction on priorities and approach
• Share brand guidance and examples
• Review initial work to make sure everything feels aligned
• Have routine check-ins, provide feedback, and an end-of-placement review

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Time commitment and flexibility

​This is a fully remote volunteering role, which we ideally hope can be completed within around three months. We anticipate a minimum commitment of approximately two hours per week, though a shorter, more intensive placement could also be arranged to suit the volunteer. We are open to having more than one volunteer on this project and do not expect a single person to work through the entire Hub.

Please note: we are looking for this placement to begin as soon as possible. 

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Why volunteer with Beacon?

By volunteering with Beacon, you will:

• Help improve access to free, high-quality resources for the rare disease community
• Support patient groups, patients and advocates to build confidence and capacity
• Gain experience working with a well-established national charity
• Take on a clearly defined project with flexible working