Rodzice dzieci z SMA / Fundacja SMA | Towarzystwo Przyjaciół Szalonego Wózkowicza | Fundacja Aktywnej Rehabilitacji | Hotel Sobienie Królewskie FACEBOOK  EN

Spinal Muscular Atrophy Conference

"Weekend with SMA"
25–26 May 2013
Hotel Sobienie Królewskie
08-443 Sobienie Szlacheckie, Poland

The first-ever conference on spinal muscular atrophy in Poland. Organised by parents of SMA kids with the support of FAR Foundation and TWSP, it aims to bring together SMA patients, their carers and families, policymakers, researchers, neurologists, physiotherapists, and equipment manufacturers.

This two-day event will feature a wealth of lectures, presentations, debates and workshops run by renowned professionals from leading centres in Poland. It will offer SMA-affected families plenty of opportunities for experience sharing and socialising. The venue – a beautiful 19th century palace-turned-hotel in the midst of Mazovia countryside which was generously made available to us by its Owner – ensures a relaxing atmosphere.

The Conference aims to achieve the following:
  1. Shorten the diagnosis time and increase the awareness of spinal muscular atrophy. We want the conference presentations to serve as the core of a information materials on SMA to be prepared for the newly diagnosed and for medical professionals.
  2. Improve the everyday life of SMA patients. We want SMA affected families to have access to the most up-to-date medical information and best practices in such areas as therapeutics, drugs in development, physiotherapy techniques, patient support, and equipment. We also want to encourage families to share their experiences.
  3. Encourage Polish national health service to adopt standards of care in muscular atrophy. We want to lobby with the national health authorities for the improvement of services provided to SMA patients by the national health service.
The conference is open to everybody free of charge, with most of the costs generously covered by the donors. Participants are asked to register (in Polish only, sorry), and those affected by SMA and their carers will be offered accommodation in the luxurious Hotel Sobienie at the venue.

For further information please email us at [email protected].