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We’ve. officially. made. it.

Over the last 12 months, we’ve successfully:

  • Hunted down coveted loo rolls in Tesco🧻
  • Retaught ourselves Maths and home schooled the kids👩‍🏫
  • Survived getting locked in with our signficant others for months on end without being *too* snippy toward each other😅
  • Toured our coworkers’ home virtually during Zoom calls and met their kids, dogs, cats and occasional postman! 🏡
  • Applauded The NHS for selflessly fighting on the frontline👏
  • Learned how to navigate the new world we suddenly found ourselves in like a PRO with resilience, bravery and HOPE.🧭
  • Succeeded and persevered despite it all💪

It’s been a long road, but 2020 is finally cancelled. Before we ride off into the sunset and 2021, join us as we reflect back on a year that no one saw coming; not even Nostradamus himself and that’s saying something!

Here is your whistle-stop tour of Findacure’s 2020 year in review. Highlights only!

January 2020 – as told by our CEO, Rick Thompson

We began January with a blog previewing the year entitled “2020 vision” and ending with the immortal line “We’re looking forward to seeing you all in 2020!” If nothing else, this lovely little blog shows us that predicting the future is a mug’s game!

The year 2020 really has not been anything we expected, and it is hard to believe that our last face-to-face patient group training event on Leading a Rare Disease Patient group was held on the 22nd of January.

This workshop was the product of a lot of thought and development within the team. We wanted to better understand the role of a patient group leader and the journey they go on from founding a group to establishing a fully professional organisation. With talks from a number of patient groups leaders and a session from a leadership coach, our workshop was a fascinating day and an event format that we hope to return to soon!

February 2020 – as told by our CEO, Rick Thompson

February is always a big month for Findacure with the celebration of Rare Disease Day, the publication of our Student Voice Prize winners, and of course, Findacure’s Drug Repurposing for Rare Diseases conference.

This year’s conference really was a special one. It was our best attended drug repurposing conference to date and was held in a new, slick venue with our largest ever exhibition. We had talks from the US charity, Cures Within Reach, a compelling talk from Student Voice Prize runner up, Sandy Ayoub, and an amazing insight into the collaborative nature of repurposing with a talk from Intrabio, Niemann Pick UK, and CATS.

Sadly, the day stands out to many of us as the last mass gathering we attended before the COVID lockdown – at least it was a good one!

March 2020 – as told by our Projects Coordinator, Philippa Norman

March was the month that the UK was put into national lockdown and the Findacure team settled into working from home even more.

On the fifth of the month, we documented Employee Appreciation Day on our blog. This theme couldn’t have been more pertinent, as the Findacure team had to work harder than ever to deliver our training to the rare disease community.

During March, we took our Patient Group Mentoring launch event online to say hello to our new mentoring pairs! The launch event helped attendees set SMART goals and highlighted some success stories from past mentees and mentors. Although it wasn’t the event we had planned, it was great to meet the new members of the programme and set them up on their journey to achieving their goals.

April 2020 – as told by our Projects Coordinator, Philippa Norman

In April, we saw Queen Elizabeth give an address to the nation for only the 5th time in her 66 year reign!

Over at Findacure, we were also busy working on a lot of broadcasting of our own. Throughout the month of April, we ran two webinars for our community that focused on two very different themes.

The first webinar, “Evaluating the impact of drug repurposing in rare diseases and Covid-19,” drew comparisons between Covid-19 and rare diseases and highlighted the impact that drug repurposing can have on both.

We held the second webinar on the 22nd April and focused on “Recruiting and managing trustees.” In this very different webinar, we learned all about the importance of making sure that our organisations have the right trustees; those who are reflective of their community and can work to drive their goals forward.

The webinars we held in April really demonstrated the range of training and skills we look to provide our community. We’re thrilled to continue this breadth of training heading into 2021 and beyond!

May 2020 – as told by our Fundraising Manager, Laura Thompson – Harper

Our first online workshop took place in May 2020. This three-day virtual event focused around the theme of “Setting yourself up for fundraising success,” with the ultimate aim of providing expertise on how to transition patient group funding away from community fundraising and to applying for grants, foundations and corporate funding!

The workshop featured some amazing talks from:

June 2020 – as told by our Fundraising Manager, Laura Thompson – Harper

Our very own Mary Rose Roberts, our Head of Operations, celebrated her fourth year at Findacure in June!

Mary Rose has not only successfully coordinated our first-ever Virtual Rare Disease Showcase (now our most successful event to date!) but has also held not one but THREE job titles with us over her Findacure career!

Mary Rose has planned well over 30 events and is the driving force behind so much of the important work our charity delivers to support rare disease patient groups. We couldn’t manage without her, so I would like to take this opportunity to thank her for all her hard work and passion – particularly throughout the challenges of 2020!

July 2020 – as told by our Marketing & Engagement Manager, Blayne Baker

Top of the morning to ya!

July was the month I joined Findacure as the team’s Marketing & Engagement Manager. Since then, I’ve been managing our communications, social media and website!

This little Yankee Doodle adores living and working in England, and Findacure is a major reason why. Thank you to everyone in the rare disease community for welcoming me like family and making the summer one I’ll never forget. It’s an honour getting to work with you and helping to advance rare disease research, care, policy and treatment beside you. You never cease to inspire me with your determination and passion!

As you know, we’re currently looking for a new Projects Administrator to join our team. If I could tell potential applicants one thing, it’s this: You’ll never find a team, community or cause more fulfilling than ours. This is where you can be 100% yourself and make a true difference in the lives of others. Apply now and give yourself the gift of a rewarding career and a vibrant, impassioned rare disease family!

P.S. If you’re coming from America, please bring rootbeer!!

August 2020 – as told by our Marketing & Engagement Manager, Blayne Baker

In August, we held a RareChat to discuss the rare disease community’s experience with registries and registry development.

Our rare disease patient groups shared their personal views on how sharing information could impact rare disease treatment, as well as the challenges that come with rare disease data collection.

RareChat was developed out of a need to connect with others during lockdown and has become a forum that allows Findacure and our rare disease patient groups to benefit from each other’s experience and knowledge. We look forward to hosting RareChats long into 2021 and beyond!

September 2020 – as told by our Projects Coordinator, Philippa Norman

Back in September, we hosted a three-day online workshop that detailed how patient groups can successfully collaborate with stakeholders from across the rare disease spectrum. The goal of the workshop was to help patient groups collaborate with industry, pharma and other rare disease patient groups so that the rare community can advocate for change as one, united force.

Knowing how many patient group organisations exist with similar ethos and goals across the globe, we wanted to help our patient group representatives understand how they can utilise their global community’s shared passion to connect with people who want to help them and advance their cause.

We discussed working together with patient groups and charities, building relationships with industry and collaborating with medical professionals. Another successful workshop for Findacure!

October 2020 – as told by our Fundraising Manager, Laura Thompson – Harper

As a charity working with rare disease patient groups, we wanted to support the Rare Youth Revolution and raise awareness of youth mental health in our community. 

Youth Mental Health Awareness Day took place on the 7th September 2020, and in support, the Findacure team launched the #RareMinds: Youth Campaign. This campaign looked to highlight some unheard voices in our rare disease community with a focus on teens and young adults.

The experiences faced by teens and young adults can be vast. It is not only young people with rare conditions that are affected in this age group, but also their family members and friends. The stories shared with us over the months of September and October demonstrated the resilience and unspoken challenges of young people in the rare disease space and resulted in a powerful campaign during the month of October.

November 2020 – as told by our Head of Operations, Mary Rose Roberts

November was a super exciting month for our team. We kicked off the winter season celebrating not one, not two, but three(!) anniversaries, with Laura and Phil celebrating the end of their 1st year with Findacure and the charity itself turning 8!

Sadly, we couldn’t spend too much time revelling, because the Virtual Rare Disease Showcase was right around the corner! Navigating this new virtual world can be a tricky business, but our team powered on through to deliver our most ambitious (and biggest!) event to date.

From 17th – 19th November, we were thrilled to welcome over 300 rare disease advocates and 50+ speakers, who joined us to explore how technology and digital innovations are revolutionising the rare disease space. The showcase was an overwhelming success and the feedback we’ve received has been so wonderful. A huge thanks to everyone involved!

December 2020 – as told by our Head of Operations, Mary Rose Roberts

December is a time for slowing down, relaxing and getting mentally prepared to devour copious amounts of turkey and stuffing, right? Well, the third might be true, but there’s certainly been no signs of slacking at Findacure HQ!

Following the success of our showcase, we dived straight into our final RareChat of 2020, naturally focusing on the wonderful world of virtual events. We also found time to host our Patient Group Mentoring programme’s winter meet-up, which gave us all an opportunity to touch base and celebrate the tenacity, determination and perseverance of our patient group cohort this year. And if all that’s not enough, we hit the big GO button on recruiting for our 6th member of staff!

Our interactive events can’t run themselves you know, so apply to join our team as our new Projects Administrator! View the full job description now and email an up-to-date CV and covering letter addressed to Dr Rick Thompson (CEO) and Mary Rose Roberts (Head of Operations) to [email protected] by 9am on the 29th December, outlining your relevant skills and experience. We welcome enquiries about the role to the same email address.

Goodbye 2020 – it’s been real, it’s been fun, but it hasn’t been real fun!

To the rare disease community, thank you for being the beacon of light, which has guided and supported us throughout this year. We cannot wait to return in 2021 to continue our vital work.

We hope that you’ll be able to spend the holidays with a few family and friends and that 2021 will turn out to be a year of celebration after a long year of uncertainty.

Stay safe, and have a very Merry Christmas and a Happy New Year!

The Findacure Team

Welp, we didn’t see 2020 coming: What an unprecedented year it’s been!

by Blayne Baker time to read: 15 min