Repeat! How to be the best leader for your community

Masterclass | Online

Back by popular demand

Due to the overwhelming success and high demand of the previous masterclass, we’re excited to announce the return of our leadership training for rare disease patient groups.

This masterclass was oversubscribed in 2023 so we have decided to run it again to give those who missed out and other rare leaders the chance attend.

This masterclass is tailored for rare disease patient group leaders aiming to enhance 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 fulfil their potential.

The masterclass aims to equip participants with resilience and confidence, enabling them to navigate the unique challenges that face them as rare leaders. 

New for 2024!

In response to feedback from last years masterclass we have decided to add an additional session with our coach.

Participants will now have the opportunity to work one-on-one with the coach for four one-hour virtual sessions.

In addition, there will also be a welcome session with everyone taking part in the masterclass on the 27th of June and a closing session in November to mark the end of the series. Both of these sessions will be hosted online via Zoom.

Welcome session, 27th June

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 - November

Each participant will have four 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 November to have their four sessions, the time and date of these will be set between the individual and coach at their convenience.

Closing session, November

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.

Hear from one of last years participants:

Quotation mark

I have achieved so much with the coach’s support that would not have been possible without these sessions. This support ultimately benefits my community and my team to improve the outcomes for all with our rare condition. My only critique would be we desperately need more of this kind of support to sustain small rare disease charities.

Quotation mark

How to apply

Due to the in-depth nature of this masterclass, we only have a limited number of spaces available.

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.

Applications must be completed by the 30th May! 

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 a coaching session?

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.

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!

Photo of Flora

Key details

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