Rare Disease Foundation, an innovative rare disease research grantor, with a cross country network of peer to peer community groups, announces restructuring to ignite the power of rare.
Vancouver, British Columbia – September 12, 2019 – Rare Disease Foundation (RDF) Board of Directors is pleased to announce the appointment of RDF Co-founder and Medical Geneticist Dr. Millan Patel, as Interim Chief Executive Officer. Dr. Patel has taken leave from the RDF Board of Directors to accept the role, bringing decades of clinical practice experience, caring for people with rare disease and a great deal of passion to the RDF cause. He will work with the RDF Staff and Board of Directors to create a robust internal structure, in order to support expansion of the Peer2Peer community groups as well as the Microgrant Program, which is already fast-tracking cures for patients.
“We are focusing on a significant national and global expansion to create change and connect communities of patients, care-providers, researchers and doctors to foster quicker cures and ensure patients with rare disease are connected, cared-for and counted,” remarked Dr. Patel.
As part of RDF’s restructuring for growth, Dr. Patel will be joined by Sanaz Maleki, who will serve as Chief Operating Officer, and Dr. Shirin Kalyan, as Chief Scientific Officer.
Maleki will be responsible for the day-to-day operations and overall growth of RDF going forward. She brings a significant track record for organizational growth, as an innovative business leader and former global executive for several multinational companies. Maleki also brings the patient perspective as a rare disease patient and parent.
Dr. Shirin Kalyan, who holds a PhD in Experimental Medicine, will lead RDF’s research agenda. Dr. Kalyan is an Adjunct Professor with the Department of Medicine at the University of British Columbia and Lead Scientist of the BC Children’s Hospital Research Institute’s Answer Factory, a unique new resource developed to solve clinical research problems with the goal of improving patient care. Dr. Kalyan is also the Director of Scientific Innovation of a clinical-stage Canadian biotechnology company. As such, she brings a rare breadth of experience in translating research to the clinic and developing new medicines. Dr. Kalyan states, “I am excited to be working with RDF as the incoming Chief Scientific Officer. I have witnessed the remarkable impact RDF has had in changing the landscape of rare disease research since its inception. This is directly because RDF, at its core, is an embodiment of the communities it serves and a champion for those living with rare conditions.”
The RDF Board also wishes to thank the organization’s former Executive Director, David Cox, for his hard work and significant contributions to the structure and growth of RDF since his appointment in 2015.
“We are thrilled to have the new executive team lead RDF and to continue our mission of connecting and serving the communities of patients, caregivers, health care providers, researchers & supporters to transform the lives of those living with rare disease.” states RDF Board Chair Isabel Jordan.
About Rare Disease Foundation (RDF)
The Rare Disease Foundation is a registered Canadian charitable organization, founded in 2008, by a deeply committed community of patients, their families and scientific researchers, working together hand-in-hand to transform the lives of Canadians living with rare disease. RDF provides innovative research, aimed at fast-tracking cures, and brings networks of patients and care-providers together, to share local support, expertise and resources.
For more information about RDF, please visit us at www.rarediseasefoundation.org
Media Enquiries:
Rare Disease Foundation
Sanaz Maleki
sanaz@eplagency.com
Ph: 613-292-7678
