About us

The main mission of the Association is to integrate families with Fabry disease. Our activities cover many areas but the most important thing is to ensure that all Fabry patients have access to appropriate treatment.

We try to spread awaraness of Fabry disease mainly through activities in social media and participation in conferences and meetings in medical community. We believe that together we can do more so we invite all Fabry patients and their families to join us.

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Establishment of the Association

2002

Joining to National Forum for the Treatment of Rare Disease "Orphan"

2004

Joining to Fabry International Network

2006

Negative decision for reimbursement of the treatment

2014

Reimbursement for Enzyme Replacement Therapy

2019

Oral treatment in Fabry disease is reimbursed

2020

We cooperate with

Available treatment

Treatment of Fabry disease with Enzyme Replacement Therapy (agalsidase alfa and agalsidase beta) has been reimbursed in Poland since September 2019.

From 2020, the reimbursement applies also to oral treatment (migalastat).

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Medical centers for treatment of Fabry disease

News

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Zapraszamy na Instagram

Rozpoczynamy działania na Instagramie. Zapraszamy do śledzenia nas na stowarzyszenie_fabry.

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Fabry Faces – Webinar dla pacjentów, cz. 1

W dniu 13 stycznia 2022 o godzinie 19:00 odbędzie się spotkanie online przeznaczone dla pacjentów z chorobą Fabry’ego oraz ich rodzin. Poniżej agenda spotkania: 19:00

Read more about Fabry Faces – Webinar dla pacjentów, cz. 1
Saventic Foundation
Read more about Saventic Foundation

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