Together for
the right to treatment
In Moldova, life-saving SMA therapies are not on the list of state-compensated medications. We are uniting — patients, families, friends and allies — to change this.
3
Treatments approved worldwide
0
Compensated by the state in Moldova
Patients' voice
Fighting for real access to treatment
Our mission
Spinal Muscular Atrophy (SMA) is a rare genetic disease. In recent years, treatments have emerged that stop disease progression and save lives. In Europe, many countries include them in their national programmes. In Moldova — they do not. Families are left to find solutions on their own, through donations or treatment abroad. We are building a community that will make this issue heard: before the authorities, in the media, in society.
What we do together
Three directions we build together with every family and every ally who joins us.
Changing the system
We work to include SMA treatments on the list of state-compensated medications. We gather evidence, signatures and voices for dialogue with the authorities.
Connecting families
We connect families dealing with SMA in Moldova. No one should go through this alone.
Honest information
We collect verified information about the disease, treatments, rights and concrete steps. No medical jargon, no false promises.
Answers to the first questions
This information does not replace medical advice, but can be a starting point in the first days, when everything feels confusing.
- SMA (Spinal Muscular Atrophy) is a genetic disease that affects motor neurons — cells that carry signals from the brain to muscles. There are four main types, depending on age of onset and severity. SMA does NOT affect intelligence — the child remains fully conscious and able to learn.
- Confirm the diagnosis with a genetic test (SMN1 gene) if not done already. Book a consultation with a pediatric neurologist. Write down your questions on paper — shock can erase everything during the appointment. And allow yourself to feel scared or sad; that is normal.
- Yes. Since 2016-2020 three treatments are approved worldwide: Spinraza, Zolgensma and Evrysdi. They do not cure the disease, but they can stop or slow it down, especially when started early. Details on the "About SMA" page.
- Through the public system — no. These drugs are NOT on the list of medications compensated by the state. Moldovan families access treatment through international programmes, donations, or treatment in other EU countries. Changing this reality is one of our main causes.
- Use the floating button in the corner (Telegram), the form on the Contact page, or the email shown in the footer. We respond to every message.
- There are several ways: connect with us and share your story (so we are heard), spread the information within your circle, sign petitions and open letters when we organise them, suggest contacts with doctors and journalists. Every voice matters.
One voice is not enough. One hundred — is.
Reach out where it is convenient for you: on Telegram, on our Facebook page, or through the form on the Contact page. We reply to every message.
Alone — a case. Together — an issue.
Numbers matter: the more families are visible, the harder it is to ignore the problem of access to treatment.