Since Beacon’s establishment in 2012, our focus has been on providing free, comprehensive training to rare disease patient groups.
Over the past 11 years, we have delivered more than 100 trainings across workshops, webinars, mentoring programmes, masterclasses, e-learning materials and more – all free of charge.
Whilst our dedication to this mission remains strong, moving forward there will be some changes in our approach.
Starting in 2024, we will be introducing a refundable deposit system for patient groups on a number of our training programmes.
How this works:
- For certain trainings, you will now need to pay a small, refundable deposit when you register or apply.
- This deposit will be kept safe until after the training has been completed. In most cases, payment of the deposit will be administered through Eventbrite or PayPal.
- After the event, if you attended and signed in, you’ll get your full deposit back. In most cases, this will be refunded via the same method through which you paid.
This means our training remains 100% free for all patient groups who register and attend our programmes.
At time of writing, we intend to roll out this deposit system across all in-person events, online workshops, masterclasses and our mentoring programme.
The Resources Hub and our webinars will not be affected by this change.
Why are we making this change?
In recent years, we have faced challenges related to participant dropout rates in our programmes – something which has risen significantly since the increase of our online trainings in 2020. We have always viewed a degree of dropouts as inevitable, however, we can no longer ignore the impact this has on our operations and finances.
For both logistical and budgetary reasons, many of our programmes have capped participant numbers. Unfortunately, when people dropout of these programmes without prior notice, we are unable to re-allocate their place.
This has affected our ability to reach as many patient groups as possible and is of particular concern for programmes which are in high demand and often have people on waiting lists.
Our programmes also come at a significant cost for us. These challenges have meant our finances don’t stretch as far as we want them to and has limited the extent of support we are able to offer the community.
Like all small charities, we are facing rising costs across all areas, and it is more important than ever to ensure our limited funds have the widest reach.
We want to be clear that the introduction of this deposit scheme is not a punitive measure. Over the past 18 months, we have conducted a number of consultations with our community and Patient Group Engagement Committee and have decided upon this action to ensure the effectiveness and sustainability of our training programmes.
Your support matters
We understand this may come as a big change, and we appreciate the rare disease community’s continued support as we implement this new system.
This is a strategic move aimed at ensuring the longevity of our training initiatives and expanding our impact within the rare disease community. We also appreciate that the introduction of deposits may place a financial barrier to some groups – in these circumstances we encourage you to get in touch with us to discuss your specific needs.
We remain committed to our mission of providing high quality, accessible trainings to rare disease patient groups. If you have any questions or concerns, please feel free to reach out to our team at projects@rarebeacon.org.
