Patient Working Group
The patient perspective is crucial in our research. By collaborating with patients and caretakers in our Patients Working Group, we want to ensure that the patient perspective truly guides the direction of the project.
Are you living with a rare eye disease, or a caretaker of someone who is? Do you want to help advance research into new treatments by sharing your perspective? Then we’d love to hear from you.
How is the Patients Working Group involved in the project?
The Patients Working Group gathers online once a year. In these online meetings, as well as throughout the project, they share their lived perspectives, raise important patient-centered questions, review communication materials, and highlight what truly matters to those affected. This way, the Patients Working Group help guide the direction of our research and ensure it remains focussed on real patient needs.
Get involved
Who can apply to join this working group?
- Individuals diagnosed with or caring for someone with:
- Aniridia-Associated Keratopathy
- Ectrodactyly-ectodermal dysplasia-clefting syndrome
- Ocular Cicatricial Pemphigoid
- Neurotrophic Keratopathy
- Corneal Neovascularisation
- Limbal Stem Cell Deficiency
- Ocular Graft versus Host Disease
- Comfortable communicating in English
- Able to participate in one online meeting per year
- 18 years or older
Questions?
Use our contact form or email us at restorevision@catalyze-group.com
Apply here:
As a Patient Working Group member, you will:
1
Be part of an international project researching treatments for rare eye conditions
2
Join one online meeting per year with fellow patients and leading researchers in ophtalmology
3
Help ensure the patient perspective guides the project’s direction
Interested in Restore Vision?
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