DUCHENNE UK
Duchenne UK - Bringing an end to Duchenne muscular dystrophy
1147094
2012
duchenneuk.org
duchenneuk
2117917
Podobné organizace
THE MUSCLE HELP FOUNDATION |
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ACTION DUCHENNE LIMITED |
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THE DUCHENNE RESEARCH FUND |
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THE DUCHENNE FAMILY SUPPORT GROUP |
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JOINING JACK |
Podobné organizace global
CureDuchenne |
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Charleys Fund Inc |
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THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC |
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Walking To End Duchenne Inc |
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Finns Friends |
Více z
50. rovnoběžka z.s. |
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7 DNÍ, z. s. |
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7SEAL JUDICIAL z.s. "v likvidaci" |
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7x7 z.s. |
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777 Racing Team z.s. |
Podobná návštěvnost
Českomoravská myslivecká jednota, z.s. |
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Biskupství českobudějovické |
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Český svaz kanoistů, z.s. |
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Botič o.p.s. |
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Asociace regionálních značek, z.s. |
Podobně sociální sítě (5685)
Český kynologický svaz, z.s.5700 |
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A7 camps, z.s.5700 |
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Krkonošské pivní slavnosti - spolek5700 |
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Česká společnost pro naturální sport, z.s.5700 |
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Česká triatlonová asociace5700 |
Více Sbírka peněz a/nebo distribuce fondů.
MDA RIDE z. s.Praha |
Novinky
Sign up to our Time is Muscle WhatsApp group to stay involved in the campaign! (fb)
Today we joined a group of parents of children with Duchenne muscular dystrophy (DMD), and two children with DMD, as they met with Mike Nesbitt MLA, Northern Ireland’s Minister of Health. We spent an hour with the minister and each family spoke about their experiences of living with DMD and the differences in quality of care. One very positive from the meeting was that we discussed the National Institute for Health and Care Excellence (NICE) health technology appraisal for givinostat, which will decide if it can be available on the NHS. The minister said that he would immediately ask for a paper with an action plan to prepare so, if and when NICE approves givinostat, it can be introduced in Northern Ireland in the most timely way. We look forward to seeing that actioned, and will be monitoring the situation with DMD care in Northern Ireland. (fb)
Poslední komentáře
Absolutely inspired by Duchenne UK's commitment to end Duchenne muscular dystrophy! 💪 Let's rally together to support this crucial mission and bring hope to so many families. #TimeIsMuscle #EndDuchennedetail |
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So proud to be part of this amazing community driving change for those affected by DMD! Together we can make a difference and help transform lives with vital treatments and support. 🌟 #HelpTheHeart #DuchenneUKdetail |
Poslední diskuze
How can we leverage community engagement to accelerate the pace of research and access to treatments for Duchenne muscular dystrophy?Odpovědí: 3, Naposledy před 1 den detail |
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What innovative fundraising strategies can we implement to support our Help the Heart grant initiative and enhance research into cardiac issues in DMD patients?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
4.5
O společnosti
- G12, H12, E99 -
Time is muscle Join our fastpaced and passionate community driven campaign to give our patients access to a new treatment givinostat Transforming our rare reality Our campaign for better treatment care and support for people with Duchenne muscular dystrophy DMD and their families Help the Heart We have launched our first grant call focusing solely on research into the heart. Our Help the Heart grant is worth up to 1. 5 million and will fund ambitious projects to understand and treat the hearts of people with Duchenne muscular dystrophy. Further.
Sbírka peněz a/nebo distribuce fondů. Shromažďování finančních prostředků a/nebo distribuce finančních prostředků. Zdraví - Obecné a Rehabilitační N.E.C.
