Projects
Main page
Eng
Ukr









#Childrenwewillmakeit – a new slogan for our advocacy campaign, which aims to systematically address the issue of treatment of children with SMA (spinal muscular atrophy) in Ukraine.
Facebook
Instagram
Thanks to caring people from all over the world we saved Dmytro Svichynskyi by raising $ 2,050,000 on the drug Solgensma for 80 days. However, even according to unofficial data in Ukraine, more than 200 families still need treatment for spinal muscular atrophy.

Parents of sick children with SMA continue to make every possible and impossible effort, but without the help of the state, seriously ill children are simply doomed. They have a few months, because without proper treatment, children with SMA and other orphan diseases die before they are two years old.


Together we can achieve extraordinary results as we have proved with the example of a charity fundraiser for the treatment of Odessa resident Dmytro Svichynsky!


We invite families with relatives diagnosed with SMA to join our campaign and fill out a form. After processing all the data, a website will be created to disseminate information about Smilies with the option to send charitable contributions to each child.

We offer the following solutions:
Purchase medicines registered in Ukraine – Rysdiplam or Spinraza for 90 children 1-2 types of SMA, in 2021, by concluding controlled access agreements or otherwise. Approximate cost of UAH 400 million.
Develop a national protocol for the treatment of children with AMD (currently non-existent).
Create an electronic register of patients with SMA.
Develop a comprehensive long-term program to support children with ASD, which will provide funding for:
  • purchase of medicines for people of all types of SMA;
  • introduction of early neonatal screening of children for AMS in maternity hospitals; UAH 150 million
  • creation of reference centers, on a territorial basis, for children with rare orphan diseases, where they will work with multidisciplinary teams of doctors.
    Introduce mandatory family information about possible genetic risks that could lead to the birth of a sick child.
    Negotiate with Roche to continue the Risdiplam early access program, which ended in July 2021.

    Currently, 58 families in Ukraine receive free treatment under this program.


    Negotiate with Novartis, the developer of the Zolgensma gene therapy drug, on:

    • registration of the drug in Ukraine;

    • purchase of Solgensma at the expense of the state budget.
    Innovative drugs are often made by one manufacturer. They are sold under confidential agreements, offering each country a special price. The conclusion of controlled access agreements makes it possible to negotiate a discount and receive drugs cheaper than they are supplied to the markets of countries with higher incomes.

    You can find ost recent information about the project on official site and donate instruction below
    Details for payment in UAH
    Отримувач: БЛАГОДІЙНИЙ ФОНД "МАНІФЕСТ МИРУ"
    ЄДРПОУ/ІПН отримувача: 39253522
    Рахунок отримувача: UA903071230000026000020797550
    Банк отримувача: ПАТ "БАНК ВОСТОК", д. Дніпро
    МФО Банку: 307123
    Details for payment in USD
    Account with Institution: PJSC "BANK VOSTOK"
    Dnipro, Ukraine
    SWIFT CODE: ACJCUA2N
    Beneficiary Customer: UA883071230000026009010797550,
    BF MANIFEST MYRU,
    m. Odesa, Ukraine
    Details of Payment: Charity Payment
    Details for payment in EUR
    Account with Institution: PJSC "BANK VOSTOK",
    Dnipro, Ukraine
    SWIFT CODE: ACJCUA2N
    Beneficiary customer: UA883071230000026009010797550,
    BF MANIFEST MYRU,
    m. Odesa,
    Ukraine
    Details of Payment: Charity Payment