GeneQuest Foundation was established in December 2025. The first months were only possible because we met people and organizations who gave us much more than their formal duty required: specific knowledge, hours of time outside their schedules, patience when we had to slow down, and empathy that no form ever asks for. Some led us through the formal and legal beginnings of the foundation. Others opened the doors to the international FD/MAS community. They all did this without charge.
We treat this page as part of the foundation's transparency - and as a sincere thank-you. Every person and organization listed below has had a real impact on where we are today.
OWES (Social Economy Support Center) is an institution most young foundations in Poland don't know - and should. They help free of charge with setting up an NGO: they review the statute, prepare resolutions and attachments, walk you through online KRS registration, and advise on first formal post-registration steps (NIP-8, Central Register of Beneficial Owners).
For GeneQuest Foundation it was literally the difference between months of wandering through regulations and launching efficiently in line with public-benefit requirements - and the feeling that someone was genuinely rooting for us.
Specialist in local animation and support of social-economy entities at OWES Zielona Góra (Fundacja na rzecz Collegium Polonicum).
Monika did not just walk us through formalities - she rewrote our first draft of the statute into a structure readable by the KRS clerk, advised on phrasing public-benefit objectives, pointed out where we conflated goals with means, and sent us a full set of contacts at Polish rare-disease organizations we hadn't known before.
When we had to pause work on the documents for a few weeks due to personal matters, her response was warm and free of pressure. She did all of this with the kind of empathy no EU project form ever asks for - and that is what we will remember most.
Thank you, Pani Moniko.
The FD/MAS Alliance connects families, adult patients, clinicians, and researchers from over a dozen countries. It maintains a global directory of FD/MAS-experienced clinicians (Physician Database), publishes clinical guidelines together with diagnostic flowcharts (the "Treatment Guidelines" path), runs an annual Global Awareness Week, supports patient research (Patient Registry), and organizes community conferences.
For our family, the FD/MAS Alliance was the first place online where we found genuinely current international clinical guidelines for FD - clearly presented, freely available, and connected to a community. For GeneQuest Foundation it also became the place where we began building first contacts with other rare-disease patient organizations.
FD/MAS Alliance - coordinator of Global Awareness Week, the Office Hours program, and Research Priorities Workshops.
Tovah was the first person from the FD/MAS Alliance to invite GeneQuest Foundation onto the global Office Hours schedule during FD/MAS Global Awareness Week. She put Dariusz on the schedule with the label "Newly formed Polish group" - a small gesture, but for a newly registered Polish foundation it meant inclusion in the international community already in our first months. Thank you for your trust and for signaling that there is a place for us.
Thank you, Tovah.
These organizations did not directly help GeneQuest Foundation, but they are important points of support for families affected by rare genetic diseases in Poland. We learned about some of them through recommendations from Monika Michalska of OWES.
If you run or know a Polish organization that should be on this list, write to us - we'll happily add it.