If you provide us with your e-mail address, it will be used only to contact you again in case we need further information or for the helplines to offer you support in trying to access care. By filling this field, you consent for your email address to be shared with the rare disease helpline in your country and kept on EURORDIS files for no more than six months.
Individual stories will not be used without additional permission and discussion with you. Any publication will be anonymous.
Thank you for participating in this questionnaire and for sharing your experience. We truly value your time and commitment!