Our workshops provide practical, hands-on guidance for rare disease patient groups
Building a community for a rare disease is no simple task. When patients or parents make the decision to begin a patient support group for a rare condition, it can be difficult for them to know where to start, what to look for, and how to move forward. What policies, strategies and documents do you need? What advisers should you have in place, and how do you recruit them? How do you improve diagnosis pathways? How can you support the work of researchers and the drug development industry? It is very easy to feel overwhelmed by all the questions and to lose focus.
Our workshops connect patient groups at all stages of their journeys, helping them to get answers to their questions without having to ‘reinvent the wheel’. Each workshop focuses on a specific topic, chosen from suggestions from beneficiaries, and features talks by both experienced patient groups and related professionals. We record our workshops to ensure a wide-reaching and long-lasting impact.
By sharing learning across patient groups, we are saving them significant time, resources and money, meaning they can focus on what’s most important to them: transforming the lives of patients.
Don’t just take our word for it. Meet our community.
How does the workshop programme work?
Our workshops last a full day and take place in central London. The exact venue and date is normally released around two months before it is due to take place, and is announced on our website, newsletter, Facebook and Twitter.
As well as talks from experienced patient groups and relevant professionals, our workshops feature group activities, networking breaks, and refreshments. We record the presentations and release the videos freely on our YouTube channel to maximise the benefit of our work. Some presentations are also developed into guides on our e-learning portal.
Rare diseases can put a lot of financial strain on patients and their families, due to high health costs and loss of employment. We therefore do not charge patient advocates to attend our workshops and we reimburse travel* to ensure those who require support are able to attend, regardless of their financial situation.
In the last four years, our workshops have been attended by 350 people from more than 200 different organisations. In feedback, 91% agreed the workshop increased their knowledge and skills, and 98% found it useful to have a range of patient group speakers.
* Findacure will always reimburse expense claims up to the total value of £75.00 per person, contingent upon the presentation of valid receipts. You can read our Expenses Policy in full here.
How do I get involved?
Anyone with an interest in rare diseases is welcome to join our workshops. Register for a workshop event below or scroll down to find recordings from past events.
- Social impact of rare diseases: accessing support for medical and social care, accessing education support for children, access to equipment and home improvements, legal and insurance issues
- Patient involvement in clinical research: recruitment and retention for clinical trials, designing clinical trials with patient input, natural history studies
- Planning a patient group conference: the benefits and logistics of organising a patient group conference, conferences for families, conferences for researchers
Keep an eye on this page to find out the dates and locations of future workshops, or sign up to our monthly newsletter to receive updates and alerts on all our projects. If you have any more topics to suggest, or think you could present at one of our workshops, please contact [email protected].
Don’t just take our word for it. Meet Russell.
Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare hereditary condition. There was very little advice about what was going on and why it was happening, and what was there was often conflicting. After struggling to set up a patient support group for two years, Russell and two colleagues attended Findacure’s first workshop. They were inspired by the stories they heard from other rare disease support groups and the LHON Society was born that evening. Russell has since attended multiple workshops, learning about NICE’s HST approval programme, European Commission funding for rare diseases, and working with pharma to better support patients.
“At heart I am a difficult person to please and can usually find criticism for almost anything. However I am really struggling to find any criticism here. Everyone I have spoken to feels very positive about the workshops.”