The EVA WAY Foundation, founded by Eva Portmann, is dedicated to helping rare disease patient organizations succeed. By leveraging expertise in scientific research, advanced programming, and organizational development, we aim to help these groups amplify their voices and achieve their goals with confidence while remaining autonomous.

Building Capacity for Patient-Led Research in MG

Myasthenia Gravis (MG) is a rare autoimmune disease that causes fluctuating weakness in all muscles, including the muscles needed to breathe. Oxygen saturation monitoring often misses early respiratory decline, leading to misdiagnosis and delayed care.

The project proposed by the EuMGA includes a medical device to aid in more timely diagnosis and improve overall care for MG patients.

The EuMGA organization leading this study already brings together an outstanding Scientific Advisory Board, a group of patient experts, and the expertise of several clinical centers in Europe.

What they needed for their next step was this: specialized knowledge in medical-device development. That’s exactly where the EVA WAY Foundation is proud to step in and support.

Our support includes funding for the research costs and direct access to an expert to advise on the device, as well as to train and empower the patient experts themselves. When patients are part of every step of research, the results truly meet their needs and make a real difference in their lives. This collaborative approach ensures the team becomes increasingly skilled, confident, and independent for this project and future ones.

At the EVA WAY Foundation, we believe that support should go further than simply funding a project: it should strengthen the people behind it.