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As we come into summer, it feels like time has been going at the speed of light. None of us could have imagined what 2020 would bring, and as we came into 2021, it was uncertain what was ahead. Findacure has been fortunate to continue delivering its empowerment work to rare disease patient groups in online formats and the success of this has been huge. We have been able to reach more people than ever before through our online training and events in the UK and beyond.

So as the world starts to adapt yet again, and we enter a new phase following the pandemic, our team would like to extend its thanks to all those who have supported us on this journey.

As we come into summer, it feels like time has been going at the speed of light. None of us could have imagined what 2020 would bring, and as we came into 2021, it was uncertain what was ahead. Findacure has been fortunate to continue delivering its empowerment work to rare disease patient groups in online formats and the success of this has been huge. We have been able to reach more people than ever before through our online training and events in the UK and beyond.

So as the world starts to adapt yet again, and we enter a new phase following the pandemic, our team would like to extend its thanks to all those who have supported us on this journey.

Drug Repurposing for Rare Diseases Conference 2020

In February 2020, we hosted our last face-to-face event of the year, though we were not aware of this at the time. We gathered in London to hold what was a fantastic and engaging event, featuring speakers from across the community and highlighting innovative work, new ideas, and personal experience in the field.

However, in other ways, the 2020 conference was a big change. The event was hosted at a new venue – The America Square Conference Centre – and included multiple sponsor and patient group exhibitors alongside various talk formats and lengths. All these little changes, along with a lot of hard work, combined to make the 2020 conference the largest and most successful to date, with more attendees than ever before but that same Findacure feel.

Thank you to our sponsors, without whom this event would not have been possible: Gold sponsors Sobi, Ergomed, LifeArc and Newron, and our Bronze sponsors PharmacoMedics and Roche. And, of course a massive thank you to Healx, our 2020 Corporate Partner.

COVID-19 & RareChat

By April 2020, we received support from Cambridge Community Fund to aid us in responding to the needs of our community through the early stages of the COVID-19 pandemic. This funding allowed us to develop and increase our online work and tailor topics to the urgent needs of patient groups at this time. This funding enabled the launch of our RareChat.

Originally launched as a focus group to establish what our community needed, these sessions quickly developed into regular monthly online chatroom sessions for groups to offer each other peer support and advice during challenging times. This project has since received support from Cambridge Healthcare Research and the Edward Gosling Foundation. RareChat has now become an integrated part of our Empowerment Programme in 2021.

The Empowerment Programme

Findacure would like to take the opportunity to thank the National Lottery Community Fund (NLCF), whose funding of our Empowerment Programme began in 2019. They have supported our work and the adaptations we have had to make to deliver our workshops and patient group mentoring online.

The flexibility and support offered from the NLCF to help us respond to the needs of rare disease patient groups has been incredible and we are so grateful for their ongoing encouragement of our work.

This then leads us to thanking our corporate partners Illumina and Amicus Therapeutics, whose grant funding has helped us further in the delivery of the empowerment programme as a whole over 2020.

Thank you to Alexion for your sponsorship of our individual programmes within this, including our patient group mentoring and workshops. We are so grateful to Rhythm Pharmaceuticals and SOBI also for their support of this stand of the programme.

Pro bono work

Valuable pro bono support has also been received throughout the year from Julian Stanley who offered training for our leadership workshop; Costello Medical, Cello Health and Little Robot offering us their expertise to deliver our empowerment work and e-learning opportunities.

We are also thankful for the contribution to our three-day workshop “Getting heard above the noise: making effective use of social media” from Philip Saich, Managing Director of Postscript, and Jack Stevens, a Videographer & Photographer at Cookie Cut Media, who walked us through what social media is and which platforms are used to raise awareness by organisations.

The Virtual Rare Disease Showcase

As last year came to a close, we went on to deliver our first Virtual Rare Disease Showcase Series, seeing over 350 rare disease advocates joining us from across the globe to hear about digital and technological innovations in rare diseases.

This would not have been possible without our corporate partner Healx, headline sponsor Bionical Emas, session sponsors Roche, Aparito and Open Health and funding from Awards for All, a National Lottery Community Fund Initiative.

The event hosted 25+ hours of virtual content, 50+ speakers and20+ sessions all led up to…

1 incredible #RareShowcase2020!

None of this would have been achieved without your support.

Thank you to our 2020 supporters!

2020 was an innovative year. We have explored new ways of working and developing ideas for new projects.

As a not-for-profit, Findacure relies on the generosity of companies and other bodies to deliver our projects. We could not offer our empowerment programme and events that unify the rare disease community without your grant funding, sponsorship and pro bono support.

Thank you to all who have stood by rare disease patients and the work Findacure do – we couldn’t do it without you!

 

Thank you for helping to transform the lives of people affected by rare diseases

by Laura Thompson-Harper time to read: 8 min
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