Seventh EAMDA Youth Camp was held from July 15th to 22nd 2016 at the Centre M.A.R.E. Rovinj. Camp attended 29 persons with MD and NMD from Slovenia, Serbia and Croatia. During the Camp seminars and lectures were held covering the topics:
- Convention on the Rights of Persons with Disabilities (CRPD)
- Aplication of non-invasive ventilation and the importance of monitoring the respiratory function
- Importance of exchanging experiences among persons with MD and NMD and their parents (peer counseling)
- European project on personal assistance implemented by the Croatian muscular dystrophy association (SDDH) and Zagreb muscular dystrophy society (DDZ)
- Presentation of the book „Swimming and other forms of muscular dystrophy movement in the water“
- History of the town Rovinj
In addition to educational activities, every day through the Camp, on a beach adapted for the persons with disabilities, a rehabilitation program was preformed were young people, besides swimming in the sea, had the opportunity to conduct breathing exercises on the Respifit-S and CliniFLO devices, active-assistive and passive stretching on the Thera-vital and exercise using the Compex for the electro stimulation of the muscles.
Nice atmosphere was complemented with social games, movie and music nights, art and creative workshops and visiting the park “Mini Croatia”. The participants expressed special satisfaction with the whole atmosphere in which the Camp was held and wish to participate again.
For further information please contact:
Association of muscular dystrophy societies of Croatia
Nova Ves 4
tel/fax 01 46 66 849
Between 24 and 27 September, 2015 EAMDA organized 45th Annual General Meeting in Belgrade. Friday, September 25 we were able to attend very interesting medical conference with world-renowned lecturers, who had great presentations on the topics important for people with neuromuscular disorders. According to the program, Saturday, September 26 has been dedicated to the social topics and exchange ideas. We would like to thank all participants for attendance.
We are very happy to announce that EAMDA, United Parent Projects Muscular Dystrophy and European Organisation for Rare Diseases - EURORDIS have signed joint letter on Re-examine January 2014 Negative Opinion on Conditional Approval of Ataluren (Translarna) sent to Committee for Medicinal Products for Human Use at European Medicines Agency (EMA). The common effort resulted that EMA granted Conditional Approval for Ataluren (Translarna). The full version of the letter is reachable HERE.
With initiative of United Parent Project Muscular Dystrophy, EAMDA and other world wide known organizations supports activities followed by announced World Duchenne Awareness Day, 7th of September 2014. This day will be a focal point for the worldwide Duchenne Muscular Dystrophy community with the aim to bring this devastating condition to the attention of a wider global audience. More information you can find by visiting this page.