RESTOREVISION Patients Working Group

This form is open until 01/12/2025.

This form is to collect applications from patient representatives of 7 rare eye diseases to join Restore Vision's Patients Working Group:

Aniridia-Associated Keratopathy
Ocular Cicatricial Pemphigoid
Ectrodactyly-ectodermal dysplasia-clefting syndrome
Neurotrophic Keratopathy
Limbal Stem Cell Deficiency
Ocular Graft versus Host Disease
Corneal Neovascularisation

This group will meet annually online to discuss project progress and provide the patient perspective to help shape project outcomes. Before filling out the application below, please take a moment to read more about this opportunity here: www.restorevision-project.eu/patients-working-group

By submitting this form, you confirm that the information provided is accurate to the best of your knowledge, and you consent to being contacted regarding your application for the Restore Vision project. You are also agreeing to the privacy notice stated at the end of this form.

Should you have any questions regarding your data please contact restorevision@catalyze-group.com

For more information on Restore Vision - www.restorevision-project.eu

Name*

Email*

I am a...*

PatientCaretaker

Specify the disease*

Aniridia-Associated KeratopathyEctrodactyly-ectodermaldysplasia-clefting syndromeOcular Cicatricial PemphigoidNeurotrophic KeratopathyCorneal NeovascularisationLimbal Stem Cell DeficiencyOcular Graft versus Host Disease

If caretaker, please specify your relationship to the person diagnosed (e.g., my daughter has aniridia)*

Are you affiliated with any Patient Organisation or Association that supports people with visual impairment? If so specify which and what role do you have.

Tell us a bit more on why you would like to join the Restore Vision project*

Privacy Notice
To consider your application to join RESTOREVISION Patients Working Group, we have to collect personal data from you to evaluate your application and contact you. Should you be selected, we will store your contact information for the duration of the project. Should you not be selected, your data will be deleted within a month after the selection process is completed.

The data you provide will be processed by RESTOREVISION team under the General Data Protection Regulation (Regulation (EU) 2016/679). As such, you have the following rights with regards to the data you provide:
- Right of access – You have the right to request a copy of the Personal data that we hold about you.
- Right of correction – You have the right to correct Personal Data that we hold about you that is inaccurate or incomplete.
- Right to erase – You have the right to ask iCARE4CVD to delete or remove Personal Data from our records
- Right to restrict – You have the right to restrict the processing of your Personal Data.
- Right to transfer – You have the right to have the Personal Data we hold about you transferred to another organisation.
- Right to object – You have the right to object to certain types of processing such as direct marketing, as well as processing we undertake based on our legitimate interests.