Myaware is the name of the Myasthenia Gravis Association. MGA has been around since May 1976. We support people with myasthenia and their families, increase public and medical awareness of the condition and raise funds for research and support staff. Members of myaware can access our free benefits and counselling services.

If you’ve just been diagnosed with myasthenia, you’ve come to the right place. Our aim is to make your life easier. We provide information, advice and support. Call us now or join myaware online. You will have free access to our resource centre which includes advice on everything from the latest medical developments and treatments to how to negotiate the benefits system. You can also get in touch with other members who understand what you are going through.


 What makes a new medicine valuable to you- a survey

myaware is pleased to be participating in a study being undertaken by Leuven University, together with Orphanet Inserm US14 (under the sponsorship of Dr. Ségolène Aymé) and King’s College London, to explore how individuals affected by a rare/genetic condition and their caregivers and families define ‘value’ when thinking about new medicines.

What this study is about:

This study aims to: (i)  contribute to articulating a clear patient and caregivers voice on the definition of ‘value’ of new medicines specific for rare/genetic conditions, and (ii) feed into the topical policy debate on ways to incorporate patient and caregiver insights into the decision-making process of pharmaceutical regulators.

Outcomes of the study will include:

  • generate new insights into patients’ and caregivers’ values and preferences for individuals with rare/genetic conditions, specifically for the UK
  • peer-reviewed scientific articles in which all organisations participating will be recognised;
  • summary patient-focused brochure describing the study results addressed to patients and their families, which would be made available to organisations who supported the study; and
  • discussion of study results at a policy roundtable on patient and caregiver perspectives on new medicines, including organisations who were involved in the study and policy-makers.

Please note that:

  • this survey is intended to BOTH individuals affected by a rare/genetic condition and their caregivers living in the United Kingdom;
  • 16 patient associations, representing collectively some 80+ rare/genetic diseases, have kindly accepted to partner with us;
  • the survey will run from August 1st till October 31st (i.e. 3 months)

The webpage hosting this survey is:

It will take around 20 minutes to complete



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