Patient Group Pairing

What is The Patient Group Pairing Scheme?

The Student Voice Prize Patient Group Pairing Scheme gives medical students, nurses and biological sciences undergraduate and masters students the chance to be paired with a rare disease patient group to learn first-hand about their condition and patient experience.

The scheme benefits patient groups because it allows groups to share their story and experiences with a doctor, nurse or scientist of tomorrow who may never have considered working with rare disease before.

The scheme benefits students because it introduces them to rare disease early on in their career and helps them to understand the patient experience. They will learn a first-hand account of what it’s like to live with a rare disease in the hopes that they walk away with a new perspective on rare disease care, policy, research and treatment.

Deadline: All Patient Group and Student Pairing Forms must be submitted by 2nd November if you’d like to take part in this year’s competition. Tiz the rules!

Should you have any questions or concerns regarding the Patient Group Pairing Scheme, either as a patient group representative or as a student, please email one of the following:

The Student Voice Prize team: [email protected]

Lucy McKay, CEO of Medics4RareDiseases[email protected] 

Rick Thompson, CEO of Findacure: [email protected]

What is Expected of Patient Groups?

Participating patient groups will be expected to:

  • Share basic information with Findacure to hold in a database, allowing them to match students with patient groups that match their broad areas of interest.
  • Allow Findacure to share a contact email address with any matched students.
  • Arrange to spend a time of up to one hour in phone conversation with their paired student BEFORE 9th NOVEMBER 2020.
  • Share information with the student about their rare condition and their experience as a patient.
  • Endeavour to answer the student’s questions where possible. 
  • Respect the students other time commitments when arranging the call. 

Ready to help inspire the minds of tomorrow?

Fill out the Patient Group Pairing Form below for your chance to be paired with a 2020 student!

What is Expected of Students?

Students who would like to be paired with a rare disease patient group will be expected to:

  • Prepare a series of questions prior to your interview with your paired patient group.
  • Arrange a time for the interview with the patient group in advance.
  • Respect the views and experiences of the patient representatives.
  • Agree to share an essay that features the disease of your paired patient organisation with that organisation after the competition winners are announced.
  •  Maintain confidentiality and not disclose any details that haven’t been agreed in advance with the person you are interviewing.
  • Remove any identifiable details about the person you interview – bearing in mind that in such small patient populations it can be easy to identify people with very little information.

Can Partnering with a Patient Group Help My Essay?

Meet Maisha Umama

Maisha entered The Student Voice Prize 2018 competition and was paired with Fibrous Dysplasia Support Society under the Patient Group Pairing Scheme. Maisha was one of the 2018 Runner-Ups with her essay entitled Four things I learned from an individual with fibrous dysplasia.

Here is an excerpt from her essay!

“…rare diseases collectively affect 1 in 17 people meaning that as future clinicians we need to consider how we can provide high quality care to patients with diseases that may be unfamiliar to us. Fibrous dysplasia (FD) is one of those conditions. With an estimated prevalence of 1 in 15000-30000 individuals , it is unsurprising that I had never come across it. Even after researching it I don’t believe I understood how debilitating it can be until I talked to H, an individual with FD, about her experience. It was saddening to hear how FD has severely disrupted her life and disheartening (or at times shocking) to hear about her experiences with healthcare. The chances of me or anyone else coming across a patient with FD may be low but there are many lessons in H’s story that, although seemingly obvious, are important for all good clinicians to remember.”

Copyright © Findacure 2020
Registered Charity no: 1149646 | Company Registration: 8174973

Copyright © Medics4RareDiseases Ltd 2020
Registered Charity no: 1183996 | Company Registration: 11119884