Project information

Empowerment Workshops for Rare Disease Patients

Having a rare disease can be incredibly isolating. Where support groups exist, they are often run by patients themselves, who lack experience in the third sector and healthcare. We run workshops to teach patient groups how to expand networks, strengthen support, and accelerate research.

January 2016 - December 2016

Charity information: Findacure

Findacure logo
  • Need


    Rare disease patients often experience severe neglect and isolation, in addition to poor health. As doctors can be unfamiliar with rarer conditions, it takes an average of eight years for an accurate diagnosis, and once diagnosed, patients will often have to teach doctors about their conditions. Support therefore comes in the form of patient communities, rather than medical specialists; yet 50% of rare conditions do not have a specific patient support group to turn to.


    Findacure is dedicated to the development of patient support groups. Our training workshops teach group leaders how they can expand their network, strengthen their support, and accelerate treatment research. Next year, we hope to add to the success of our 2014 and 2015 patient group workshops by holding another four. Topics will be: Navigating highly specialised technologies programmes; Setting up patient registries; Strategic development of patient groups; and Working with researchers.

  • Aims

    Aim 1

    To start and strengthen rare disease patient groups, to the benefit of individual patients


    » Our training workshops teach group leaders how they can best support patients and improve their outreach.
    » We also hold year-long peer mentoring schemes and networking events to achieve this aim.

    What success will look like

    Patient groups successfully implementing strategies taught at our workshops is our measure of achievement; in addition to repeat attendance and positive feedback.

    Aim 2

    To encourage established patient groups to campaign for research into treatments


    » Our workshops help patients understand current research and the clinical environment, and the part they can play in the treatment development process.
    » As strong patient groups with accurate registries are vital in clinical trials, our work is making the process more efficient.

    What success will look like

    Our vision is that, with our support, patient groups will be able to build links with scientists and motivate the research necessary to develop a treatment for their disease.

  • Impact


    As patients and advocates will gain better knowledge on managing patient groups, they will be able to improve the services that they provide. This will enable more individual patients to overcome isolation and take control of their condition – and will also enable advocates to campaign for research into treatments. Long-term, this will increase the treatments available to rare disease patients, leading to a healthier community. Currently only 200 of 7,000 rare diseases have licensed treatments.


    There is a risk that speakers or workshop leaders could drop out. We will minimise this risk by maintaining good contact with the speakers, and requesting their presentations ahead of time. In an emergency, a member of Findacure staff would be able to deliver their section of the workshop for them.


    Funders of this project will receive a quarterly email report detailing the activities of each workshop and the feedback given from workshop delegates. At the end of the year, we will send an email outlining any new strategies or research projects being implemented as a result of our training.

  • Budget

    Budget - Project Cost: £8,550

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      Amount Heading Description
      £2,400 Venue Hire Calculated at £600 per workshop
      £800 Catering £5 per person x 40 attendees x 4 workshops
      £2,400 Travel Expenses £15 per person x 40 attendees x 4 workshops
      £950 Audio/Visual + Print Resources Screens, microphones, technical equipment and printed workshop training materials
      £2,000 Project Management Head of Development's time, travel and associated expenses
  • Background


    All workshops will be held in central London, as the city’s excellent transport links mean delegates from across the UK can attend. Due to the financial strain that rare diseases impart on patients, part of our budget covers their travel expenses. We believe that all rare disease patients and advocates, regardless of location and financial situation, should have the opportunity to benefit from our workshops.


    Rare disease patients will benefit from the improved capacity of their representative communities and foundations to deliver support, set up research projects and manage their communities. The patient groups themselves will benefit through the relief of stress, and the facilitation of community links between different patient groups throughout the UK, as well as by gaining valuable links to industry to promote and accelerate drug research.

  • Why Us?

    Why Us?

    When Dr Nick Sireau’s sons were born with the rare disease Alkaptonuria, he felt isolated and there were few places he could turn for advice. After establishing the AKU Society to support patients and develop a cure, he began Findacure so other patient organisations could learn from his experiences. Still building on Nick’s work, Findacure are the only UK organisation offering free, expert advice of this kind. Our 2014 and 2015 workshops received exceptionally positive feedback.

    Read more about the Charity running this project.


    Flóra Raffai

    Executive Director

    Rick Thompson

    Scientific Officer

    Libbie Read

    Fundraising and Communications Officer


will pay for one patient to attend a workshop

Patients are not necessarily equipped with the tools, but we all need for support, to understand about research and to get grant funding.

2014 Workshop Delegate