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
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The appraisal for assessment of the use of Ravulizumab on the NHS has been withdrawn by the company. A third committee meeting to assess Efgartigimod has been scheduled for May 2024 following the release of further draft guidance.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
Our mother, Sylvia, passed away on 31 December 2023. She had been supportive of Myasthenia, particularly research, since her son was diagnosed some years ago. It is fitting that this is the charity that should be supported, if people kindly choose to do so, in memory of Sylvia. Thank you for your support. 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
My brother Michael Boult fought bravely against MG and MS but finally lost his fight on 30 November 2023. MG and MS are terrible illnesses and organisations like MyAware need money to try and fight and limit the effects.Please donate whatever you can afford every penny helps👍 Read more
The Ford RideLondon-Essex 100 starts in central London then towards Essex. Myaware’s dedicated fundraising team will be there to support you! Read more
Online support groups for people living with myasthenia. Read more
Current myaware research projects, apply for grants and more! Read more
Help raise awareness, get recent news updates...find out more on our awareness page. Read more
Myaware's support services - find out more about how we help people with myasthenia. Read more