Useful Information for all the Families living in Italy under the current Italian laws
Useful Information for Families
PATIENT RIGHTS
Children with Lafora disease fall into the category of Citizens with Disabilities
- From the moment of diagnosis, they are entitled to a disability pension and the so-called "Accompagnamento" (attendance allowance).
- Working family members (Caregivers) can benefit from "Law 104" which provides paid leave and board in case of the patient's hospitalization.
- Municipalities can provide the HCP (Home Care Premium) allowance.
Given the complexity of regulations and varying conditions:
- It is advisable to contact a CAF (Tax Assistance Center) for various procedures.
- It is advisable to contact the Social Workers of your municipality of residence to delve into various requests for allowances and for the provision of services for school-aged and non-school-aged children.
USEFUL INFORMATION FOR GENETIC TESTING ON FAMILY MEMBERS
WHAT IS THE PURPOSE OF GENETIC TESTING?
- to confirm/exclude the diagnosis of Lafora Disease
- to identify healthy carriers
WHO CAN UNDERGO THE TEST?
- Adults and minors with a clinical suspicion of Lafora Disease.
- Minor and adult relatives of individuals who tested positive.
- Adult partners of healthy carriers for the identification of at-risk couples.
The test must be placed within a clinical context, based on specialist consultation. The test is free if it falls within the preceding cases, according to the law on rare diseases (Ministerial Decree 179/2001).
Download the complete guide to Lafora disease
published by the Italian Lafora Association