As we celebrate our 50^th birthday, we’re aiming to raise £10,000 to kickstart a fund for a National Patient Registry which will be built by you and for you and will influence decisions on which new medications will become available on the NHS in the future. Every donation counts!

 

Now that the medication Rozanolixizumab has been approved for reimbursement via NHS England, this is just the first step in opening up access to other targeted treatments.

One of the reasons why medications such as Zilucoplan and Efgartigimod received initial negative recommendations was because of a lack of data on how myasthenia effects people financially, socially, emotionally and physically. The National Patient Registry will allow you to document your own personal lived experience with myasthenia.

Charlotte Campbell, myaware’s Research and Partnership’s Manager said:

"Our experience working with the National Institute for Health and Care Excellence (NICE) has highlighted the sincere need to capture the reality of myasthenia by all who are affected. Patient-reported outcomes are essential in diagnosing, treating, and managing myasthenia, but also in detailing the burden of the disease. We hope that the development of a national patient registry will help resolve this growing problem. This registry will be for patients to input their own data and experience and be developed with input from the community so that it accurately reflects their needs." 

Marc Smith, myaware’s CEO said:

“Our community’s lived experiences can play a crucial role in enhancing the design, delivery, and access to treatment and care for individuals living with myasthenia in the UK. That’s why establishing a Patient Data Registry for myasthenia is so fundamentally important. By systematically capturing people’s personal stories and real-world experiences, these data, insights and resources enable healthcare professionals and researchers to identify gaps, optimise clinical pathways, and tailor interventions to meet the specific needs of the myasthenia community. Ultimately, integrating the voices and real-life journeys of people affected supports more equitable, effective, and truly patient-centred care across the country.”

Can you help us kickstart our essential National Patient Registry Database fund by donating £20? 

myaware's MAM Appeal 50th Birthday Cake

Alternatively, as it’s our 50^th birthday celebrations, we have created a digital birthday cake where you can add a birthday candle and leave a message letting us know how you feel we have helped you.

Minimum Birthday Candle donations are £20.

To add a birthday candle, follow the link below or if you would like to add a birthday candle when you donate by cheque or by phone, please let us know your name along with a message which is no larger than 50 words.

myaware reserves the right to delete any comment or content (without notification) that is deemed inappropriate, or that could pose a reputational risk to myaware.

Add a birthday candle to our cake

Thank you for supporting our amazing community.