Spinal muscular atrophy (SMA) is a severe genetic disease that, without treatment, leads to loss of motor function and, in severe forms, threatens life. Today there are medicines that halt the disease's progression and give children and adults with SMA a chance at a full life: Spinraza (nusinersen), Evrysdi (risdiplam) and the gene therapy Zolgensma.
The problem is that in Moldova these medicines are not on the list of those reimbursed by the state. Their cost — tens and hundreds of thousands of euros per year — is out of reach for families. This means SMA patients in our country are effectively denied access to treatment that is already saving lives in neighbouring countries.
Our goal is to have the life-saving SMA medicines included on Moldova's list of reimbursed medicines (through the Ministry of Health and the National Health Insurance Company, CNAM).
What we are doing about it:
Collecting data on SMA patients in Moldova — to show the state the real scale of the problem.
Documenting families' stories — behind every number is a person.
Preparing the medical and economic case together with doctors and experts.
Building ties with international organisations (SMA Europe, EURORDIS) and learning from countries where treatment is already available.
Bringing the issue to decision-makers — and to society.
How you can help: support the project with a donation, share the information, tell us your story, or join the team. The more of us there are, the louder the voice. The right to treatment should not depend on where you were born.
Campaigning to get life-saving SMA medicines onto Moldova's reimbursed medicines list.