On October 3 and 4, 2024 in Moscow will take place Russia’s largest expert conference on amyotrophic lateral sclerosis (ALS) with international participation. This event is for the medical and patient communities, and everyone interested in the topic of neuromuscular diseases. The organizer of the event since 2015 is the Live Now Charitable Foundation. Every year, more than 50 speakers and 1,000 specialists and patients take part in the conference online and offline.
The conference site is a meeting place for key experts, researchers and practitioners: scientists, doctors, medical personnel, healthcare managers, as well as patients and their loved ones. Invited speakers include leading world experts with many years of experience working with ALS.
The difficulty of diagnosing ALS, caused by doctors’ insufficient knowledge of the symptoms of the disease, makes people with ALS invisible to society, the healthcare system and the state. According to an expert study carried out with the support of the foundation, there are 12–15 thousand such people in Russia.
“Just imagine that all the residents of Kalyazin, Gorokhovets or Svirsk are invisible! Our task is to make these people tangible and visible. So that they are not left alone with their illness, so that they and their families can receive comprehensive help: medical, psychological, social», – says Natalya Lugovaya, director of the Live Now Charitable Foundation.
A large-scale conference with international participation is an ideal tool not only for public awareness of ALS, but also for solving vital practical problems at the federal level. Improving the quality of life not just of individual randomly identified patients with ALS and their families, but also a systematic solution to the problems of providing palliative care in the regions of Russia. So that anywhere in the country, and not just in Moscow or other large cities, patients have equal opportunities and access to diagnostics, medical and psychological care, medications, special equipment, nursing and restorative practices.
The event will be held in a hybrid format: we have provided the possibility of both offline and online presence. There will also be scientific sections, master classes and round tables for doctors and patients.
The ALS conference of the Live Now Charitable Foundation is a unique professional platform that brings together the medical and patient communities to present new treatment methods and put them into practice, research and medicines, and exchange experiences.
More information here: https://alsfund.ru/educational-projects/ezhegodnaya-konferentsiya-po-bas-9/
For reference:
The Live Now Charitable Foundation is the only NGO in Russia that provides systematic help to people with amyotrophic lateral sclerosis. It was created in 2015 by the patients themselves and their loved ones.
Since its inception, the foundation has helped more than 5,000 families. At the moment, there are 1046 wards registered with the fund.
ALS, better known as Stephen Hawking’s disease, is a rare, incurable disease in which motor nerve cells stop sending signals to muscles. A person gradually loses the ability to move independently, talk, swallow, and breathe. The disease can overtake literally every person. It is not yet possible to understand its causes, predict the course of the disease, or find an effective cure, but we can help a person live his life with dignity.
