Manuel Lubinus, MBA, Ph.D. appointed as Patient-Centric Research Advisor

We are excited to announce that Manuel Lubinus, MBA, Ph.D. has been appointed to our new Scientific Advisory Board as Patient-Centric Research Advisor.

Manuel was diagnosed with inclusion body myositis (IBM) in the spring of 2019, after experiencing symptoms for four years. In his search for information and support resources, he found MSU. Twelve-months of interacting with patients and physicians at different settings has provided him with a new appreciation for the warriors who fight these conditions every day with a smile on their faces. “It’s impossible not to be moved by the courage of the myositis support group,” he said, ” and how important it is to be a part of a community that cares about you when you have a rare disease”.

With a Ph.D. in Immunology, Manuel is ideally positioned to lead the MSU effort to work collaboratively and in complement with other myositis organizations. Manuel will be focused on initiatives to broaden MSU advocacy on clinical trials and implement new patient focus data initiatives such as patient registries, natural disease studies, and biobanks. Manuel also represents MSU on NIH’s International Myositis Assessment and Clinical Studies Group (IMACS).

“It’s impossible not to be moved by the courage of the myositis support group, and how important it is to be a part of a community that cares about you when you have a rare disease.” – Manuel Lubinus

Manuel joins William Tillier, BSc, MScInternational Scientific Advisor, on the Advisory Board with a mission to improve the quality of life for patients living with the Idiopathic Inflammatory Myopathies (IIM) by accelerating the discovery of new treatments for myositis. Up to now, MSU has been distilling research articles to provide research insights to the community, gaining an understanding of the scientific direction of myositis research, and determining how a patient-centric collaborative network concept might be realized across the myositis community. Under the direction of Lynn Wilson, MSU Vice President, the Advisory Board intends to leverage the expertise of other rare disease organizations involved in patient advocacy, and collaborating with business, academia, and government agencies in order to influence and support the creation of a patient-centric approach in the myositis community.

The movement is growing to get the patient perspective in the management and treatment of rare diseases. We believe as a patient-centric organization, we need to be active partners rather than quiet stakeholders and that the time to take action is now. Please join us in welcoming Manuel to the team.



Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

  1. Sapna Sareen 11 months ago

    Congratulations Manuel! We appreciate your time and commitment to further the patient centric research for IBM. Like you said it is a difficult fight to fight a rare disease and community’s support is so crucial. My husband was diagnosed with IBM in 2016 and now he is dealing with lot more issues, it is very difficult to see him go through this. I would like to be involved in some way to help build up the community support. I have a Masters degree in Molecular Biology and I can follow some of the research happening in this area. I would like you to advice me how can I be of any help. Thanks!

  2. Jerry Williams 2 years ago

    Welcome, @manuel94! We are grateful for your determination, and your expertise and time, to help move forward patient-centric research using a collaborative approach. The time is now. Glad to have you on the team!

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