Global Genes, one of the leading rare disease patient advocacy organizations in the world has selected Dr. Carmencita Padilla as one of the 2016 Rare Champions of Hope. Dr. Padilla will receive a “Rare Champion of Hope” recognition under the Medical care and Treatment -International category.
As published on the Global Genes website, Dr. Carmencita Padilla, the current Chancellor of the University of the Philippines Manila was recognized for her “remarkable contribution to the rare disease community [which] has made her a beacon of hope for many in the Philippines. She is instrumental in creating genetic services at the Philippine General Hospital, which later became the Institute of Human Genetics of the National Institutes of Health-UP Manila. She introduced newborn screening for optimal health in the Philippines and is responsible for the Newborn Screening Act of 2004. Dr. Padilla is also Founding Chairman of the Philippine Society for Orphan Disorder and is again instrumental in the passage of the Rare Disease Act of the Philippines enacted March 2016, after 7 years of deliberating with 3 congresses. Her innovations are influential in providing all aspects of support and awareness about rare disease in the country and beyond." [1]
The Rare Champions of Hope award recognizes the notable efforts of individuals and organizations in rare disease advocacy, science, collaborative work, and medical care and treatment. According to Global Genes, over 350 individuals and organizations worldwide were nominated for the award this year. The awardees were selected by the Global Genes Board of Directors, Medical and Science Advisory Board and other key partners.
Dr. Padilla will be joining Gina Szanuk (Advocacy), Emily Kramer-Golinkoff (Advocacy), Elisabeth Linton (Advocacy - International), Peter Dankelson (Teen Advocacy), Dr. Elif Oral (Medical Care and Treatment), Dr. Ann Calof and Dr. Arthur Lander (Science), Dr. Illana Gozes (Science – International), Kelly Ranallo (Collaborations in Advocacy) and SOAR-NPC/Support of Accelerated Research for Niemann-Pick C (Collaborations in Science and Technology). 2016 Rare Champion of Hope awards will also be given to Dr. Philip Reilly, Sam Kimura and Alex Kimura. Reilly will also be receiving the Henri Termeer Lifetime Achievement Award, an award named after the former Genzyme President and CEO.
This year’s honorees are scheduled to be recognized at a special award ceremony, the 5th Annual Tribute to Champions of Hope on September 23 at the Hyatt Regency Huntington Beach Resort and Spa, California, USA. Proceeds from the evening will benefit Global Genes’ education programs and the RARE Patient Impact Grant Program.
Global Genes is a non-profit organization which promotes the needs of the rare diseases community. The organization has led the creation and promotion of the unifying symbol of hope of the community – the Blue Denim Genes Ribbon. According to their site, the organization has evolved from a grassroots movement of rare disease parent advocates and foundations in 2009 to a network of over 500 organizations, worldwide [2].
Dr. Padilla is the National Program Adviser of Volunteer Youth Leaders for Health (VYLH)-Philippines. # RPascual
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Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12).
