France accepts refugees from Ukraine. The French organisation AFM Téléthon is offering special support to SMA families.
Transport
SMA Foundation Poland can help you organise your trip to France. Regular minibuses depart from Poland to France or via France and we can often get a seat or place for you. We can also purchase air tickets for you if you face financial constraints. Please do not hesitate to contact us.
Formalities
No formalities are needed in order to travel to France from Poland.
For air travel, all travellers must hold a photo ID – a Ukrainian ID document or a Ukrainian biometric passport. For children who have only a Ukrainian birth certificate, it is necessary to obtain a citizenship certificate. Citizenship certificates are issued free of charge at Ukrainian consulates, usually on the same day, upon submission of the original birth certificate and a current passport-style photograph of the child.
Accommodation
For people with SMA and other neuromuscular conditions, AFM Téléthon has prepared fully adapted facilities in three parts of the country: the Paris region, Brittany and Jura.
Contact AFM Téléthon directly – contact details below.
SMA treatment
In accordance with the European Union directive, people fleeing the war in Ukraine should have full access to healthcare in the country that has granted them temporary protection. Currently, we do not have confirmed information regarding any restrictions on the access to SMA treatment in France for people from Ukraine.
The standard therapy for SMA in France is Spinraza. The drug is funded for all patients regardless of age and disease type, with the exception of patients requiring mechanical ventilation.
Evrysdi is offered to patients with SMA types 1 and 2 through a state-funded early access programme.
Zolgensma is funded for the treatment of infants with spinal muscular atrophy type 1 and asymptomatic infants.
There are many hospitals in France that treat SMA. Healthcare level is very high.
Patients with SMA have access to physical therapy sessions and access to orthopedic products. Patients also receive the necessary medical and rehabilitation equipment. Patients requiring mechanical ventilation receive home-based care.
Social support
Families fleeing Ukraine have full access to social support, including benefits related to childcare, unemployment, low family income and disability.
SMA patients usually receive a mobility aid (typically, an electric wheelchair), necessary equipment for the home (beds, hoists, etc.), and sometimes an adapted vehicle. Support staff is funded to help children with special needs in kindergartens and schools. There is funding for social activities, especially for children – clubs, sports events, integration trips.
There is a scheme where people with disabilities receive ownership of an appropriate property (usually a flat); it is not clear if the programme also extends to refugees from Ukraine.
SMA Community
The SMA community is centered around AFM Téléthon (www.afm-telethon.fr), a large neuromuscular patient organization. AFM Téléthon stands ready to support Ukrainian SMA families by helping with administrative procedures, starting the therapy and, if necessary, offering limited material support. For more information send an email to [email protected].
Eclas (www.eclas.fr) provides specialized support to parents of children with SMA type 1.