Profile Category: Advisory Board

Dr. Jigyasha Sinha is a Consultant Paediatric Neurologist at Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute, Mumbai, India. She leads the department of Paediatric Neurology at the hospital’s Centre for Children. Prior to that she was the Head and Consultant in the Department of Paediatric Neurology at the Institute of Neurosciences, Kolkata. She was involved in a white matter disorder project in Amsterdam under the supervision of Prof. Van der Knaap and Prof. Nicole I Wolf. Her area of interest lies in leukodystrophies, particularly MLC, hypomyelination and movement disorders. The association of MLC with the Aggarwal community and its high case burden in India has kindled her deep interest with the passion to contribute to the world of this rare disease and support the affected families.

Mishka Michon has a long career history in development, marketing, partnership building, strategic planning and in her last role, the management of a national rare disease non-profit, the Coalition for Pulmonary Fibrosis. The Coalition developed a comprehensive set of resources for patients and families, raised national awareness of the disease, provided millions of dollars in funding to researchers and centers focused on Pulmonary Fibrosis, and partnered with pharmaceuticals, volunteers, public relations firms and others to develop a profile that would encourage attention to and an understanding of the fatal disease.  The staff also developed an ongoing relationship with the NIH as well as creating a strong presence in Washington D.C. to raise congressional action around the disease.

Raúl Estevez is Full Professor at the University of Barcelona, member of the board of directors of the Institute of Neurosciences, member of IDIBELL, and unit leader at the CIBERER (Spanish center for rare diseases). Raúl worked as a postdoc at the Zentrum Molekulare Neurobiologie Hamburg (ZMNH, Hamburg, Germany) funded by an EMBO and Marie Skłodowska-Curie fellowships, and continued as a Ramón y Cajal researcher and Associate Professor. He studied the molecular basis of rare brain diseases and channelopathies, with a focus on regulatory aspects of chloride channels. From 2003, Raúl has been studying the molecular basis of the rare disease Megalencephalic leukoencephalopathy with subcortical cysts.