PATIENTS’ IMPRESSIONS OF ENMC WORKSHOPS
“Having the patient voice heard during the workshop shows the commitment of physicians treating LAMA2 to developing relevant, practical, and understandable clinical guidelines.”
Justin Moy, a 25-year-old patient with LAMA2 congenital muscular dystrophy, contributed to discussions at the 283rd ENMC Workshop.
“It was incredibly rewarding to learn from doctors and other healthcare professionals, but equally rewarding as a patient to be heard and to have my voice included in the discussions.”
Lasse Blichfeldt Haastrup, a Becker muscular dystrophy patient who participated in the 290th ENMC Workshop, “Developing Standards of Care for Patients with Becker Muscular Dystrophy (BMD).”
“SMA Europe feels the momentum for SMA has come and the whole SMA community works hard to seize it”
A quote by both Anna Wittchen, SMA patient, and Mencía de Lemus Belmonte, mother of 2 SMA children and chair of SMA Europe, who both attended the 209th ENMC workshop on SMA outcome measurements and trial readiness.
“Now I know that all doctors are working very hard to find treatments for the myotonic dystrophy type I my wife is suffering from”
Mr and Mrs Colombo from Italy attended the 207th ENMC workshop about respiratory insufficiency in MD
