The Foundation is run by Klara’s parents, and we answer every message ourselves. We usually reply on the same day; at busier times it can take up to a day.
Contact address
Contact person
Aleksandra Sułkowska-Bojarczyk, MD
Founder and President of the Board, FBXO28 Research Foundation
Families
If your child has an FBXO28-related diagnosis, or a genetic report in your family names FBXO28 and you are trying to work out what it means, write to us. Tell us who you are and where you are. That is enough to begin.
Please do not send medical records, test results or photographs in your first message. We do not need them, and this website is not built to hold them. If structured clinical information is collected later, it will be on a secure research platform, with your explicit consent, and only after the ethics and data-protection work is finished.
Researchers and clinicians
We welcome academic laboratories, clinicians and industry partners. Patient-derived fibroblasts are available now; iPSC lines are in preparation. If you write about a possible collaboration, it helps to include your institution, the question you would want to ask, and what you would need from us.
If you have seen a patient with an FBXO28 variant, we would like to hear from you even if no collaboration is planned. Fewer than twenty cases have been published worldwide. Every additional patient changes what can be described.
Media and funders
Write to the same address and say what you need and by when. Enquiries about the research programme, its funding and its timelines are answered by the President of the Board, Aleksandra Sułkowska-Bojarczyk, MD.
About this website
This website has no user accounts. Analytics or advertising cookies are set only if you agree to them. There is one form, in the Research Library, for suggesting papers; files sent through it reach us by email and are not kept on the site. Health information is never collected through the website itself. Correspondence with us travels by ordinary email, so please treat it with the same care as any other email. The privacy policy has the details.
Medical disclaimer: information on this website is provided for educational purposes only and does not replace consultation with a qualified healthcare professional.