Spain is currently accepting refugees from Ukraine. The Spanish organization FundAME offered special support to families with SMA.
Transport
SMA Foundation Poland can help you with your trip to Spain. We are sometimes able to secure seats in minibuses that travel frequently from Poland to Spain. We can also provide airline tickets and help with airport collection in Spain. Please do not hesitate to contact us.
Formalities
No formalities are required from Ukrainian passport holders for entering Spain.
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
Upon arrival in Spain, temporary accommodation and meals are immediately provided in one of the several centers prepared for refugees from Ukraine, mainly in Madrid (example photo below). Private rooms are available in these centers. The staff speaks Ukrainian and Russian and provides assistance in everyday matters.
FundAME undertook to provide SMA families with the necessary equipment, such as lifts, toilet chairs.
As announced by the government, families will receive their own housing as soon as possible.
SMA treatment
Patients with disabilities are automatically covered by health insurance in Spain.
In Spain, all SMA patients can be treated with Spinraza. This also applies to those fleeing Ukraine. The treatment is not usually given to the weakest children who require mechanical ventilation of more than 16 hours a day.
Zolgensma (gene therapy) treatment is funded for infants with SMA type 1 and for presymptomatic children. The funding decision is taken for each patient individually.
Evrysdi is currently not funded in Spain – the reimbursement process is expected to end in mid-2022. In a recently published assessment, the Standing Committee on Medicines has positively appraised Evrysdi for treatment of children with SMA type 1 and negatively appraised it for treatment of non-ambulant patients with SMA types 2 and 3.
Each Spanish province has at least one hospital that treats SMA. Healthcare is of high quality. Hospitals in Madrid and Barcelona have most experience in treating SMA.
The Spanish state funds all medical care, including medical devices, orthoses, rehabilitation equipment, and electric wheelchairs.
Social support
Families fleeing Ukraine have full access to social support in Spain, including childcare benefits, unemployment benefits and low income benefits. Benefits in Spain are lower and the eligibility criteria are more restrictive than, for example, in the Scandinavian countries, Germany or the United Kingdom.
Individual communities (municipalities) may additionally offer disability benefits, fund housing adaptations, etc.
SMA community
The Spanish SMA organisation FundAME has been operating since 2005; it unites parents of children with SMA and adults with SMA. It offers assistance to parents from Ukraine in all formalities related to medical care in SMA.
Contact details:
Address: Calle de Antonio Miró Valverde, 7, Piso 5º G, 28055 Madrid
Tel .: (+34) 634 238 004
E-mail: [email protected]
www.fundame.net