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As we reach the end of the second year of our Empowerment Programme, myself and the team have been reflecting on all the amazing work and collaboration we have seen within the rare community. Our Empowerment Programme grew and developed in ways we could not have foreseen at the start of Year One. It is why we want to share with you a few highlights of our journey throughout 2020-2021 thus far!

The start of Year Two found us within the uncertain lockdown period of 2020. By this point, we were in full swing with our online delivery and adjusting to the changes the pandemic had thrown at us. We worked hard to respond to immediate needs to support patient groups and offer accessible guidance and resources.

 

As we reach the end of the second year of our Empowerment Programme, myself and the team have been reflecting on all the amazing work and collaboration we have seen within the rare community. Our Empowerment Programme grew and developed in ways we could not have foreseen at the start of Year One. It is why we want to share with you a few highlights of our journey throughout 2020-2021 thus far!

The start of Year Two found us within the uncertain lockdown period of 2020. By this point, we were in full swing with our online delivery and adjusting to the changes the pandemic had thrown at us. We worked hard to respond to immediate needs to support patient groups and offer accessible guidance and resources.

 

Welcome Blayne and Hannah!

We welcomed Blayne Baker, our Marketing & Engagement Manager, and Hannah Harvey, Projects Administrator, to the Findacure family. Hannah and Blayne have fitted right in and have already made a huge impact within the rare disease community.

COVID-19 impacted the face-to-face delivery of our work.

In response:

  • We transfered all our work online
  • Increased our delivery of learning materials to reduce isolation
  • Ensured that the groups we work with were supported throughout

The Virtual Rare Disease Showcase and Drug Repurposing for Rare Diseases Conference 2021

We successfully delivered our first Virtual Rare Disease Showcase in November 2020, followed by our Drug Repurposing for Rare Diseases Conference in June 2021. Both events exceeded our expectations in terms of attendance and international reach.

The Patient Group Mentoring Programme 2020

The Patient Group Mentoring Programme launched in March of last year. Twenty pairs entered the programme, but with COVID having a significant impact on our cohort’s employment, childcare, health and isolation, we did experience drop-outs from the scheme. In the end, fourteen pairs completed the programme.

Despite the challenges COVID-19 posed, we were able to successfully adapt our programme for the new online world by quickly utilising teleconferencing platforms, such as Zoom.

We hosted a two-part video training over Zoom for our 2020 mentees. The group created “Talking-Head” videos and was invited to share them with the group at the following session. The goals of our 2020 Patient Group Mentoring cohort, included: building their community, fundraising for research, becoming a charity, launching a website and improving public speaking or advocacy skills.

 

It truly has been an innovative year for our Patient Group Mentoring cohort, as each pair worked through unprecedented challenges brought on by the global pandemic. The events we have encountered worldwide have reminded us all that the goals set by patient group organisations are always contrasted against the needs of the rare disease patients and families they work with.

Our aim as a not-for-profit organisation is to be led by the needs of our beneficiaries. This year has demonstrated the strength, passion and resilience of all the groups at Findacure. We would like to take this opportunity to thank all of our mentees for their dedication to empowering the rare disease community and to our mentors who have been a vital support to those they were paired with.

We are pleased to say that two of our patient group members successfully applied for funding from The National Lottery Community Fund as a direct result of our Empowerment Programme. Other outcomes for the cohort included: successful charity registrations, clinical trials, virtual events, international community connections, virtual events, awareness videos, patient registries and much more.

Workshops

Findacure’s workshops have also developed a new format; shifting from face-to-face day-long events to online two-hour interactive sessions across three days. In September, we delivered Successful collaborations: engaging the people that matter, which focused on 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 could advocate for change as one, united force.

We kicked off 2021 with a topic that we’ve wanted to deliver for some time now: Representing your community: Engaging with ethnic minority groups. This workshop was hosted in collaboration with Breaking Down Barriers, which is a network of 30 organisations that are working together to improve the lives of people from marginalised communities, including those from BAME backgrounds, to ensure that everyone receives equal access to health services. We explored diverse experiences, improving outreach, increasing engagement  and putting theory into practice.

The year wrapped up with our Making data work: Data collection and handling basics workshop. The workshop delved into:

  • Why and how data should be collected
  • The key regulations and best practice for approaching data storage and use
  • The ways in which data can be utilised to inform key projects and strategy

The event featured some fantastic speakers from across the community, including Conan Donnelly, CEO International Niemann-Pick Disease Registry, Jess Hobart, Co-chair at The UK Mastocytosis Support Group and Dr Amy Hunter, Director of Research at Genetic Alliance UK.

Webinars

Our first webinar took place in January and saw the Findacure teamed up with its 2020-2021 Corporate Partne, Healx, to deliver an informative webinar on natural history studies in rare diseases!

In April, we continued to work on improving knowledge and awareness of diversity through our webinar, Ensuring inclusive communications around genetics, which was delivered by the experts at Breaking Down Barriers. The webinar focussed on the importance of finding ways to communicate genetics and inheritance clearly and accessibly to help rare patients and their families fully understand these crucial topics. 

The session detailed the vital considerations patients and families must make when certain genetic predispositions mean that a condition is more prevalent within a certain geography, race or culture. This aligned perfectly with the need we identified some time ago to raise awareness amongst groups to ensure that their information and support  services factor in the beliefs and practices of different communities. Only then will their services be delivered in a manner which is relevant to all.

Our final and most recent webinar covered Understanding Health Economics: Preparing for HTA. This webinar detailed the basics of health economics assessment (HTA) to help patient groups gain the knowledge and tools needed to understand the process and exploring their emerging roles in the process.

RareChat

RareChat, a new initiative developed in April 2020 in direct response to the pandemic, has continued well into 2021. We have held 12 RareChat sessions over the course of Empowerment Year Two and feedback from our attendees has been overwhelmingly positive. Patient group representatives continue to come together to share experiences, ideas, resources and perspectives with their fellow peers. With opportunities to network still limited, RareChat has allowed organisations to build connections and offer and gain support from across the rare community.

E-learning portal

Finally, one of the most exciting aspects of Year Two has been the development of a much needed upgrade to our E-learning portal. Our “Resource Hub” will be a new and improved platform with specialised and accessible e-learning guides. The software we’ve chosen will improve accessibility for those who face barriers due to language, dyslexia and visual impairments.

Our goal is for The Resource Hub to be a one-stop shop for all the materials collected from our patient group training projects. We hope that the new Hub will be an accessible, informative and fun learning experience for all within our community. It is set to launch this month and we cannot wait to see the impact it will have with our beneficiaries. Please be sure to leave your feedback so we can tailor the experience to your learning needs!

 

What’s next for Year Three?

While there can be no substitute for face-to-face interaction, the increased reach of our work, including beyond the UK, has highlighted the merits of online formats. Given this, we think online workshops will always retain a place in Findacure’s Empowerment Programme moving forward alongside face-to-face events. Going “virtual” has transformed our work and allowed it to reach beyond the UK. Examples of this can be seen within our 2021 Patient Group Mentoring Programme cohort where pairs have joined from around the world, including Brazil, USA, Switzerland, Mexico and Netherlands.

As we enter into Year Three, Findacure continues to grow and evolve to meet the needs of our community. In 2021, we are planning to introduce two new patient-group led elements to our Empowerment Programme. Firstly, we hope to initiate a masterclass series which will guide patient advocates through intensive, practical learning sessions in distinct areas. Our masterclasses will focus on providing immediate outcomes to attendees in areas such as public speaking, poster creation, messaging and more. We are also planning to incorporate a trustee recruitment pathway project to empower patient groups to tackle the trustee recruitment crisis that many of them face.

We believe that it is essential to avoid reinventing the wheel. Our work ensures that all support given to the rare disease community provides maximum benefit. Findacure is already working closely with Cambridge Rare Disease Network and Genetic Alliance UK to develop collaborative programmes for the benefit of the wider patient group community. We are also in the process of exploring European-level partnerships in the area of rare disease drug repurposing.

Thank you to everyone who has attended, supported and engaged with us throughout this year. We are so excited for Year Three of our Empowerment Programme and cannot wait to continue to grow as an organisation for the benefit of rare disease patient groups and the wider community!

The second year of our Empowerment Programme as told by Laura

by Laura Thompson-Harper time to read: 12 min
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