In-person workshop | Let's get down to business

There’s no jargon, just practical guidance to help you shape a plan that works for you. With expert speakers who understand the realities of working in rare disease, you’ll come away with tools, tips and ideas to help you use your resources wisely and build for the long term.

• Break down what a business plan is and why it matters for patient groups in a clear, accessible way, without the corporate jargon.
• Explore how to start measuring your impact, showing it as a way to recognise your progress and stay on track.
• Give you space to focus on your own organisation and start building a business plan, with support and guidance from our expert speakers.
• Offer the chance to connect with others in the rare disease community, share experiences, and learn from each other.

A business plan is your organisation’s road map for the future.

In this interactive workshop, you’ll assess where your patient group is right now, reflect on how your current activities support your mission and vision, and begin building a practical, actionable plan for what’s next.

We understand that many rare disease leaders work in isolation. However, if you are part of a team or work closely with other parents, patients, trustees or volunteers we encourage you to bring them along to help brainstorm ideas and shape your organisation’s direction together.

You can learn more on our website !

For any questions, please contact [email protected]

Registering for this workshop will require paying a refundable deposit of £30 per session upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed.

Following the event, if you have attended and signed in, you will get your full deposit back.

We understand that circumstances can change, especially in the rare disease community. Should you register for the event and realise you can no longer attend please let us know as soon as possible.

We will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 7 working days before.

Find out more about our deposit scheme here. If you have any questions, please contact [email protected].

Can I bring a carer with me?

Yes! We offer free carer tickets for carers accompanying registered delegates. If you'd like a carer to attend with you, please get a carer ticket in addition to your own ticket. Carer tickets are only available for already registered delegates.

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 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 and how do I get there?

This workshop will be at the University of Notre Dame in London. The address is 1-4 Suffolk Street, London, SW1Y 4HG, UK.

The closest underground stations are:

• Charing Cross Station - 4 minute walk (Bakerloo and Nothern lines)
• Piccadilly Circus Station – 5 minutes walk (Piccadilly and Bakerloo lines)
• Leicester Square Station - 8 minitues walk (Piccadilly and Nothern lines)

Is the venue accessible?

The venue is accessible.

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 .

Will lunch be provided?

Lunch and refreshments will be provided. If you have dietary requirements please let us know in the registration form.

This workshop is entirely an in-person training, any resources from the day will only be shared with attendees.

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