Tell your story
Would you like to share your experience with genetic testing? Talk to our team and explore the options before deciding whether to publish.
How it works
From our first conversation to your approval.
A personal account can help others understand the journey. Participation and every use of the content depend on your decision.
- 01
First contact
The patient, guardian or caregiver says they would like to tell their story and only provides what is necessary to start the conversation.
- 02
Conversation about the proposal
The team clarifies how the report could be prepared, what data would be used and the name, image and voice options.
- 03
Creation and review
The report can be prepared in text, audio or video. You review any edits before deciding.
- 04
Authorization before use
Publication only occurs after your final approval and authorization for the combined content and channels.
Frequently asked questions
Before sharing.
Who can contact?
Adult patients, legal guardians and caregivers can get in touch. The possibility of participation is assessed individually before any extensive data sample collection.
Do I need to use my name or show a photo?
No. You choose separately whether to share your name, image, voice, health details and publication channels. Our team also considers options such as initials or a pseudonym. Even without a name, details of a rare condition may make a person recognizable.
Can I change my mind?
The participant must have a channel to withdraw future authorizations. The team needs to explain the practical limits regarding content already released or materials already distributed.
How can children and teenagers participate?
The guardian authorizes participation, and the child or teenager receives an age-appropriate explanation. Their refusal must be respected.
What should I share when I first contact you?
Start by telling us you would like to talk. Before you share health information, our team will explain the proposal, how information would be used and your privacy options. You do not need to attach reports to start the conversation.
Does a story replace medical advice?
No. Reports present individual experiences and do not serve as a diagnosis, indication of examination or treatment recommendation.
Your time, your choice
Start by just saying you'd like to talk.
The first contact serves to clarify the process. He does not authorize the public use of his story.
For patients and families
Continue reading.
Start with the topic that comes closest to your question.
