FAQ
Association
How can I become a part of the association?
New members are accepted by the administration on the basis of a written declaration. To recieve the template of a membership declaration please contact the Association via email: stowarzyszenie@fabry.org.pl.
How can I leave the Association?
In order to terminate your membership, please send a request to the email address stowarzyszenie@fabry.org.pl along with the personal information of the person.
Disease
Can only men suffer from the disease?
Until recently it was thought that only men could get Fabry's disease, however both men and women are vulnerable. It can be just as severe for patients of both genders. More information can be found in the section "About the disease".
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Will my children inherit the disease?
If a women is suffering from the disease, the risk of a daughter or son inheriting the disease is 50%. If it is the father who has the disease, his daughters are certain to inherit the disease, while the sons will remain healthy
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How can I check if I have the disease?
An updated list of facilities which deal with the Fabry's disease can be found on the home page in the form of a map. To recieve help regarding diagnosing the disease, please contact the facility of choice and book a visit. It is worth first asking a general practice doctor to provide a referral.
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Treatment
Is treatment in Poland reimbursed?
Since November 2020 there are three medications which are reimbursed: two are taken in the form of intravnous infusion and one taken orally.
How can I know if my mutation can be treated orally?
To find out if your mutation can be trated orally please follow one of the links below, select the European Union region, and enter your mutation type in the box. In case of any doubts, contact your doctor.