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Masterclass series: How to be the best leader for your community

8th June at 2:00 pm - 9th October at 5:00 pm BST

Beacon is delighted to announce our next masterclass – Building Confidence: how to be the best leader for your community

This masterclass is for rare disease patient group leaders who want to improve their leadership skills. It will give participants the opportunity to work one-on-one with an expert coach who will help them increase their confidence and fulfill their potential as leaders.

Patient group leaders are often the driving force behind change in their rare disease field, however, being in this role comes with significant challenges.

Alongside coping with the usual pressures and responsibilities of leading an organisation patient group leaders also deal with significant emotional and psychological challenges. They tend to be parents, careers, or patients themselves, meaning they often have to manage their personal connection to the condition while supporting their community and advocating for change. In addition, patient group leaders come from many professional backgrounds and some don’t have leadership or organisational management experience.

This masterclass aims to help alleviate these challenges by creating resilient and well-equipped leaders who feel confident in managing these challenges and advocating for their community.

How does it work?

This masterclass will give patient group leaders the chance to work one-on-one with an expert coach for three one-hour virtual sessions.

In addition, there will also be an introductory session with everyone taking part in the masterclass on the 8th of June and a conclusion session in October to mark the end of the series. Both of these sessions will be hosted online via Zoom.

Introduction session

Thursday 8th June 14:00 – 15:00 BST

This session will introduce the masterclass, explore what coaching is and set expectations for the series.

It will also provide an opportunity to meet expert coach Flóra Raffai and the other patient group leaders in the masterclass!

One-on-one sessions

June – October

Each participant will have three one-hour coaching sessions with expert Flóra Raffai. The purpose of the sessions is to equip participants with the skills and resilience they need to be the best possible leaders and advocates.

Participants have between June and October to have their three sessions, the time and date of these will be set between the individual and coach at their convenience.

Conclusion session

October (date TBC)

This session will mark the end of the leadership masterclass.

It will provide an opportunity for participants to reflect on the series and share learning with the coach and their fellow patient group leaders.

Is this masterclass for me?

If you have never had coaching before you might be wondering what it involves. The following questions should help you decide whether this masterclass is right for you.

What is coaching?

Coaching is a form of development, where a coach supports you (a coachee) to create learning, self-development and improved performance in a way that benefits you. Through a series of one-on-one conversations, a coach will create an environment where you can do your best thinking. Coaching is based on the following equation: performance = potential – interference. A coach’s role is to help you identify your own interferences, address them, unlock your full potential, and achieve your goals.

Is coaching for me?

If you would like to have a safe, supportive, non-judgmental space to reflect on your challenges, experiences, and aspirations – then coaching is for you. If you are looking for structured training or advice on a project – then coaching may not be appropriate.

What topics might be covered in coaching sessions?

There are no set topics for sessions, what’s discussed will vary from person to person as the content is determined by the needs of the coaches. Here are some things that a coach could help with:

  • Dealing with imposter syndrome
  • Finding balance and setting boundaries
  • Feeling empowered in your role as a leader, even without previous leadership experience
  • Improving self-confidence to help you be the best possible advocate for your rare condition
  • Opportunity to discuss and share fears and challenges in a safe, confidential space that is independent of your rare community

These are suggestions of topics to give you an idea of what could be covered in a session. This is by no means an exhaustive list of what a coach could help with.

How to apply?

Due to the in-depth nature of this masterclass, we can only accept a limited amount of leaders in the series. If you are interested in taking part please complete this short application form. We will determine from the applications who we feel will get the most benefit from the series and they will continue with the masterclass.

Before applying please make sure you can fully commit to the series in its entirety.


You have until the 22nd of May to apply!

Meet the coach

Former CEO of Beacon (Findacure) Flóra Raffai will be the expert coach in this masterclass!

Since leaving Beacon Flora has been the CEO of several other small organisations and is able to channel her extensive experience into her role as a coach. She is a member of the European Mentoring and Coaching Council (EMCC), holds a  Diploma in Transformational Coaching from Catalyst 14 and a Masters in Social Innovation from the University of Cambridge Judge Business School.

With her extensive experience in the rare community and leading small organisations, alongside her professional coaching qualifications – she is the perfect person for this masterclass! 

If you have any questions or would like more information about the masterclass please contact projects@rarebeacon.org


8th June at 2:00 pm BST
9th October at 5:00 pm BST
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