Karen Cheng

I am both a patient living with a rare disease and a healthcare executive with broad international clinical and corporate experience in medical affairs, clinical development and operations, patient engagement, training and education, product and project management. I was trained as an oral surgeon at Leeds University Teaching hospitals in the UK, and continued my postgraduate training at the Royal Liverpool University Hospital with a focus on medically compromised patients and completed my fellowship training to gain membership with the Royal College of Surgeons of England. Shortly after, I spent some time in Thailand to experience field medical work and was a volunteer dental surgeon in Sri Lanka, as part of humanitarian efforts after the Indian ocean tsunami in 2004. I lived in Malaysia briefly and then moved to Singapore and took on a clinical and practice management role with the National Healthcare Group, managing 6 clinics in the public health sector, while continuing to see patients and supervising the new graduates as they started clinical work. Unexpectedly, I was diagnosed in 2006 with what was then known to be Polymyositis (PM). I spent 4.5 months in hospital and was wheelchair-dependent for 1.5 years. While recovering, I challenged myself to do an MBA to enable me to continue working in healthcare, albeit from a non-clinical role. I moved to Tokyo in 2010 for a product management opportunity with a Swiss medical device company, and I also learnt a lot from the experience of the massive earthquake while in Japan in 2011. Subsequent moves due to my job brought me to Boston, USA and Basel, Switzerland to lead several international product launch and lifecycle projects in medical devices. My desire to return to medicine made me change paths in 2016 and I took on a position as a global medical director in a rare immunology team in a pharmaceutical company. I was responsible for a portfolio of immunoglobulin therapies, which were used in immunodeficiencies and rare neurological and hematological conditions. I was happy to be able to utilize my medical and business knowledge, and my own experience as a patient receiving such therapies and having lived with my rare disease over 3 continents. I keenly engaged with therapeutic area experts and patient groups to better understand and advance patient care. During the start of the Covid-19 pandemic, I joined another company as medical director in their Neuroimmunology team to help setup a pivotal trial for a rare neurological disease and later continued working as medical lead in other neuromuscular diseases.

I took a sabbatical from work recently to focus on other personal interests and am currently serving on the board of the International Myositis Society (iMyoS), and as a patient advisor in Myositis International Health and Research Collaboration Alliance (MIHRA) to support their overall operations but also to support the administrative core team. I also support other patients living with myositis via patient organizations such as Myositis Support and Understanding (MSU) where I serve as EU Patient Advocacy Lead and The Myositis Association (TMA) where I am a member. I also served on the steering committee of the last Global Conference on Myositis (GCOM) which is a biannual event which takes place at locations on both sides of the atlantic.

Nearly 18 years after my initial diagnosis with PM, with the help of the myositis team at the NIH, I have most recently confirmed that I have immune-mediated necrotizing myopathy (IMNM) with positive anti-SRP (signal recognition particle) autoantibodies. I remain committed to the evolution and improvement of diagnosis and treatment of patients like me, and others who want to contribute more to research across the different myositis diseases. I am looking forward to more therapies being made available worldwide for patients living with myositis diseases, to help improve their quality of life and their ability to live to their fullest potential, and this is my life’s purpose to help this mission. I am thankful for the experience I have gained with living internationally with my rare neuromuscular disease, and as I am now based here in Europe, I wish to continue my life’s work in raising awareness of diseases like myositis and help bring together the community who are so vital to a patient/caregiver to improve their lives despite illness.

I commit to helping to educate healthcare professionals, clinical researchers and patients on myositis diseases and the complexities in practice and research of such rare diseases. I commit to being a patient research partner in advising, designing and developing instruments, outcomes, trial infrastructure as well as identifying common data elements. I also commit to helping to train patient research partners in the myositis diseases and in other rare diseases. I will use my skills, experience and connections in rare diseases to help further the mission of ERN EURO-NMD and its partner organisations.