The Interregional Charitable Public Organization “Hunter syndrome” traditionally organizes a New Year’s (autumn) holiday for children with a rare genetic disease - mucopolysaccharidosis.

The charity “Lilac ball” is a way to attract public attention to challenges faced by families with children suffering from rare diseases.

This exciting holiday is specifically designed to let the guests escape from difficulties just for one evening; a good opportunity for fathers to look at beautiful, well-dressed mothers, for mothers to feel like fairy-tale fays, and children who can imagine themselves being heroes of a magic fairy-tale.

The party which was held on board the vessel this year included the following events: a standing buffet, an entertainment show, a charity auction and a fair to showcase items handcrafted by children. The guests observed the dress code rules: evening dresses and formal suits with a lilac or purple ins ert. The mascots and attributes of the ball organizer are the purple bear (the main friend and assistant of MPS patients) and the sun (being a symbol of hope, warmth and kindness).

It is no coincidence that NANOLEK became a partner of the event: production of drugs for the treatment of orphan diseases is one of our priority business areas. A short time ago, we reported that we won the “PRIORITY-2020” National award, in the “Localization of production” nomination, for effective application of advanced technologies. This award was given to us for HUNTERASE, a drug used to treat mucopolysaccharidosis type II”.

Today, NANOLEK is the only Russian company that has se t up a local production in Russia to manufacture drugs for the treatment of MPS II. Since January 1, 2019, MPS II has been included in the 14 Cost-Intensive Nosologies List (NL) and is financed from the federal budget. In February 2019, Hunterase^® was included in the standards for Hunter syndrome treatment. According to the experts’ estimates, administration of Hunterase may save almost 800 million rubles of Federal budget funds over five years as compared to alternative therapy.

The ball organizer - The Interregional Charitable Public Organization “Hunter syndrome” - has been existing for more than 10 years and unites families with children suffering from a rare genetic disease - mucopolysaccharidosis. It partners with various organizations to develop specifics programs for helping children move forward with their lives and improve the quality of life of families raising children with such severe diagnosis, get involved in scientific research which is required for safe and effective supportive care and treatment.