Spinal muscular atrophy (SMA) is just as serious a problem in Poland and other former Soviet satellite states and republics, yet access to the latest in therapies and information about the disease still lags behind that of North America and Western Europe.
To address those shortcomings, SMA Foundation Poland will host its annual 2018 SMA Conference Aug. 23-25 at Warsaw’s Boss Conference Centre. About 800 people have registered to attend, including 600 SMA patients and their families from across Eastern Europe.
“When you have a child with a rare disease, you feel lonely, confused and lost,” said Kacpar Rucinski, an executive member of SMA Europe and president of SMA Foundation Poland. “Parents don’t know what the disease is all about, how to approach it or how to care for our child. Our conference brings families together and helps them share experiences and knowledge. This is especially important for families of children who have been recently diagnosed.”
Rucinski’s 9-year-old daughter, Lia, has SMA type 2. He said the conference gives families access to the most updated knowledge.
“Each year, we fly in doctors and professors to give lectures and offer individual consultations on anything related to SMA,” he told SMA News Today, which will be covering the conference. “We’ll also have pharmaceutical industry representatives to explain their efforts to develop drugs to treat SMA, and to discuss clinical trials taking place outside of Poland.”
In addition, healthcare professionals from throughout the region will meet in a simultaneous closed-door seminar to discuss new developments in SMA. All main lectures and sessions will be offered in Polish, with simultaneous English translation. Most of the patients and their families registered for the annual event are from Poland, though participants are also coming from Belarus, Hungary, Russia, Serbia, and Ukraine.
The event takes place only a week after a committee of Britain’s independent, government-funded National Institute of Health and Care Excellence (NICE) recommended against adding Spinraza (nusinersen) — an approved SMA treatment — to the subsidized public health system of England and Wales because of its “extremely high cost.”
Spinraza will, of course, be discussed, Rucinski said, who also confirmed the presence of Poland’s deputy health minister, as well as the head of the Polish National Health Service.
Other topics on the agenda include “How to improve SMA patient care in Poland,” “Firefish and Sunfish: Clinical trials of a new compound to treat SMA,” “What’s next in SMA therapy?” and “Treating Spinal deformities and administering nusinersen.”
Specialized lectures, in Polish only, will address topics such as “Pregnancy in SMA,” “Diet in SMA 2 and 3: A case study,” “My child as a sexual being,” and “Preventing spinal degeneration in carers of disabled people.”
Corporate sponsors include Apco, Bjeska, Invicta, Ottobock, and other companies, while the Polish Society of Child Neurologists and Fizjoterapia Polska are among the academic sponsors.