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Workshop: Building a rare disease patient registry

17th September, 2019 at 10:30 am - 4:30 pm

[Image description: a man in a seated audience holds a microphone and is speaking to an unseen person]

Findacure is delighted to announce its next training workshop, which will guide patient groups through developing a strategic approach to building a registry that is right for their organisation. 

What will be covered?

  • The basics – what is a registry, what is its purpose and what are the benefits?
  • What are the needs and priorities of different registry stakeholders?
  • What type of registry is right for you?
  • How to engage your community in your registry?
  • Handling data – what levels of consent are required? Who owns the data and what are your protocols for sharing information?
  • What are the implications of GDPR on patient registries?

Frequently asked questions

Who can sign up?
Anyone with an interest in rare diseases is welcome to attend. The workshop will be most beneficial to patient groups and charities who are looking to set up or improve their own rare registry.

Will lunch be provided?
Yes – lunch and refreshments will be provided. If you have any special requirements, please note this in your registration form. 

Do you cover expenses?
Findacure will reimburse travel expenses for rare disease patients, carers, patient groups and charities, up to the total value of £75.00 per person.

 If your travel is likely to exceed this amount, please contact [email protected] ahead of the event so we can discuss whether further reimbursement will be possible. 

All expenses, other than mileage, must be accompanied by valid receipts. 

For further information on our expenses policy, please click here.

Findacure would like to thank The National Lottery Community Fund for providing funding for The Empowerment Programme.


17th September, 2019
10:30 am - 4:30 pm
Event Category:


Mary Rose Roberts


White & Case
5 Old Broad Street
London, EC2N 1DW United Kingdom
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