Category Archives: National Advocacy Council
Action Duchenne: National Meeting. 21st April, Birmingham Hilton Metropole Hotel
By Andy On Saturday, Action Duchenne held its National Meeting in Birmingham. The meeting consisted of talks on research, standards of care and campaigning in the morning and then workshops in the afternoon. These workshops covered the ‘Takin’ Charge’ and … Continue reading
Filed under Action Duchenne Meetings, disability, National Advocacy Council, NHS
UK Consultation on Rare Diseases
By Samantha Reeve, Rare Disease UK Following the European Union’s recommendation for action in the field of rare diseases, the UKs four health departments collectively launched a public consultation on a UK plan for rare diseases in February (You can … Continue reading
Filed under disability, National Advocacy Council, Uncategorized
Sun, Sea, Spaghetti, and Specialist Multidisciplinary Neuromuscular Centres
By Kathy Wedell, In March four of us from Action Duchenne went to Ancona on Italy’s Adriatic coast, to check out Italy’s multidisciplinary neuromuscular centres. Funded by the European Commission, this visit was part of the ‘Professional Parents and Patients’ … Continue reading
Filed under NAC, National Advocacy Council
Crucial Day for the NHS
Today is a crucial day for the NHS all of us who have been campaigning against the Health and Social Care Bill. Today is the last day that peers will be able to scrutinise the bill – you can follow the developments … Continue reading
Filed under Lobby Events, National Advocacy Council, NHS
Where now for the NHS?
By Eilidh After months of campaigning, thousands of letters written, 171,215 of us, (currently), signing an e-petition, (which despite being well over the threshold of 100,000 signatures hasn’t been granted parliamentary debate), 14 months on, it looks like the Health and Social … Continue reading
Filed under National Advocacy Council, NHS, Uncategorized, westminster
Romania Exchange
By Kathy Wedell, NAC Member The NMD-PRO Project: ‘Neuromuscular Diseases – Professional Parents and Patients’ Four representatives from Action Duchenne have just visited Romania to make contact with a partner organisation of … Continue reading
Filed under National Advocacy Council
Daniel’s Fight for Wheelchair Services
By Daniel ( follow on twitter @DanielvsNHS or check out his blog) This is my first post for Duchenne Campaigns, it is more about my personal crusade against wheelchair services (WCS) but hopefully will give others some insight into … Continue reading
Filed under disability, National Advocacy Council
