GeneQuest

GeneQuest Foundation is a Polish foundation focused on fibrous dysplasia (FD/MAS), with the broader aim of developing resources for people affected by rare diseases. It brings together curated information, family experience, research updates, and practical tools to help families prepare for conversations with clinicians. Its bilingual Polish and English website explains FD, diagnostics, treatment, and living with the condition, while emphasizing that its materials are informational and do not replace medical advice.

The foundation is building a database of doctors in Poland and Europe with experience treating FD/MAS, alongside clinical guidelines and resources families can share with their physicians. Its public-beta GeneGuidelines project tracks new research and drafts source-cited guideline updates for clinician feedback; these are not officially approved guidelines. GeneQuest also supports research collaboration and is developing open-source tools for rare-disease research, including Research Canvas. The foundation shares research and community updates, offers ways to support its work, and connects families with relevant expertise. Its activities include molecular diagnostics training, educational resources, and support for the international FD/MAS community.