Genetic Alliance UK are organising a series of virtual workshops on the topic of cell and gene therapies, sometimes referred to as Advanced Therapy Medicinal Products (ATMPs), that will explore:
- what cell and gene therapies are
- why they’re important
- how cell and gene therapies are manufactured and developed
- how they are delivered to patients on the NHS
- what the regulatory processes are for cell and gene therapies
- how patients can get involved in the decision making processes around cell and gene therapies
As part of this project, we aim to generate a report and resources that reflect participants’ views on the best way to communicate about cell and gene therapies. We hope these resources will be useful to all those talking to patients and the wider public about this topic.
Why should I take part?
People affected by rare and genetic conditions are likely to benefit from these therapies. This project will be a great opportunity to learn about cell and gene therapies from a series of experts and some of the challenges these therapies face reaching people affected by rare and genetic conditions in the UK. It is important that the rare, genetic and undiagnosed community and the wider public, have access to up to date information on these therapies and we want to help shape the way researchers, clinicians and the media talk about this topic. To achieve that, we need your help.
Who can take part?
- If you / a member of your family / you care for someone who has a diagnosed genetic or non-genetic rare condition or a suspected genetic condition, we would like to hear from you.
- Representatives from organisations supporting the rare, genetic and undiagnosed community are also able to take part.
- You will have to be over 18 to take part.
What do I need to do in these workshops?
You will need to attend all three virtual workshops that will last approximately 1 hour 30 minutes – 2 hours each. Each workshop will include a short talk from professionals on the different topics with some interactive polling followed by group discussions facilitated by Dr Helen Pilcher, a science writer and broadcaster with a PhD in stem cell biology.
Prior to each of the sessions, we will ask you to do a little bit of reading (no more than 20 minutes worth) to discuss at the next workshop.
When are these workshops?
The exact dates of these workshops have not yet been determined but all three will be carried out in November and potentially the first week in December. On the registration form below, we will ask for your rough availability to ensure we have a full cohort of participants.
What should I do next?
If you’re interested in taking part, please fill out and submit this form to register your interest.
We do have limited spaces available for these virtual workshops and we aim to gather a cohort of people with varying experiences, backgrounds and levels of knowledge about cell and gene therapies.
The deadline to complete the registration form is 26 October 2020. As there are limited spaces available, we will be reaching out to people to confirm places between 28 October and 4 November 2020.
What if I’m not able to secure a place in these workshops but I still want to contribute?
For those who are not able to attend these workshops, we will be recording these sessions.
If those who are eligible and have registered are not able to attend we will send these recordings to you, alongside a short survey so that you can still be a part of the project and provide your views to be included in our findings and final report.
How do I stay up to date with the progress of this project?
Keep an eye on this website page as it will be updated as the project goes on.
If you would like to receive updates on the stages of progress of this project and the final report, fill in your details here to be added to a mailing list.
Who is funding this project?
This project is being funded by contributions from; BlueBirdBio, Novartis Gene Therapies and Janssen (Actellion). Funders have no editorial rights over the final report.
If you would like to support this project, please contact [email protected].
How do I get in touch?
If you have any questions or would like further information, please email [email protected].