How have you been? Has it been a while since you spoke to anyone else who has any of the myasthenias? Join our drop in to chat to others with myasthenia! Read more
Current Vacancies in myaware...click here for more details. Read more
COUCH Health is inviting people living in the UK with myasthenia gravis to participate in an online interview session. Read more
Do you live alongside someone living with one of the myasthenias? Do you care and support, at close hand or from afar? Then this event is for you! Read more
How are you and your family? Has it been a while since you spoke with anyone living with myasthenia? Read more
If you are recently diagnosed and/or have just joined myaware because someone you know has been diagnosed, then this is for you! Read more
Myaware and MDUK sent a joint letter to NICE and the related companies about targeted therapeutics in the myasthenia community. Read more about our letter and petition here Read more
Can you help myasthenia awareness bloom this Rare Disease Day? Read more
A much loved father, grandfather and great grandfather to Sally, Nigel, Debbie, Paul, Stuart, Thomas, Stefan, Jessica, Aria, Seb, Miles and Joey Read more
A webinar recording by Dr Katherine Dodd, Neurology Clinical Research Fellow, discussing emerging treatments, exercise, lifestyle, and individualising care using biomarkers on 21st February 2024 Read more
A team at King’s College London has developed a new online peer support platform in collaboration with people living with long-term physical health conditions. They are interested in finding out what people think about the new intervention, such as what they like and dislike. Want to get involved? Read more
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Myaware are continuing to engage with the relevant companies linked to the Propantheline Bromide shortage. In the meantime, we have some guidance regarding alternatives and importers for unlicensed propantheline. Read more
Efgartigimod is due to be assessed in a 3rd committee meeting with NICE in May. We are looking for the myaware community to put forth their own comments about the appraisal process so far and have prepared a guide for those who may not have done this before. Read more
There is currently a supply shortage of Propantheline Bromide. Though muscle relaxants can be contraindicated in myasthenia, Buscopan is an alternative. Read more
Applications are now open for funding towards myasthenia specialist nurses Read more
Run for myaware in the AJ Bell Great North Run! Read more
How have you been? Has it been a while since you spoke to anyone else who has any of the myasthenias, does it sometimes feel like no one else understands? Read more
Our Research and Partnerships Officer Charlotte Campbell attended the RDCN meeting in Berlin between November 29th and December 1st 2023. This meeting brought together myasthenia gravis (MG) patient groups across Europe and America with specialist healthcare professionals to discuss how best MG can be treated going forward. Read more
The appraisal for assessment of the use of Ravulizumab on the NHS has been withdrawn by the company. A third committee meeting to assess Efgartigimod has been scheduled for May 2024 following the release of further draft guidance. Myaware are looking for members to get involved and share their views with NICE to emphasise the importance of new treatments to the myasthenia community. Read more
In 2021, Iain M. Carey from St George’s published a study looking into the prevalence of neuromuscular disease in the UK. Read more
Myasthenia is a rare disease and insight from a specialist can help with treatment. Find out if there is a clinician with an interest in myasthenia near you. Read more
New treatments for myasthenia are in development. Find out more about how you can get involved. Read more
William Stein (Willie) was husband to Dianne, dad to myself (Graeme) and Colin and grandpa to Lucy, Emma and Finlay. He died suddenly, a week before Christmas, in 2023 leaving a huge hole in our family. He was diagnosed with Myasthenia Gravis in his late forties, initial symptoms included drooping eyelids and spells of weakness. In his job as a teacher, a weakened immune system and daily contact with children began to take its toll. Despite trying to continue in his role, he had no alternati Read more