Our very own Tony Gleason recently had an opportunity to represent KCNQ2 Cure Alliance at the 8th China Rare Diseases Summit held in Shenzhen China.
The summit had 18 sub-forums, 4 special conferences, and 3 satellite conferences, and had more than 130 speakers from all over the world. There were nearly 1,000 participants and more than 30 media representatives.
The goal in attending was to raise awareness of KCNQ2 and connect with other organizations, parent groups and companies that are involved in KCNQ2 or related efforts. Recent numbers indicate with over 14 million births in China per year estimates are likely about that about 1,000 KCNQ2 babies will be born in China every year. That represents an incredible potential addition to the KCNQ2 global family!
While we still have much work ahead, Tony made many important connections with parent advocacy groups, genetic testing companies, and pharmaceutical companies. He also shared the KCNQ2 perspective on a panel of rare disease organizations. Recently 5 KCNQ2 families from Hong Kong joined our group, one of which is helping with efforts to connect up with KCNQ2 families in China. One way we can bring more efforts to bear on curing KCNQ2 is to identify just how many are affected worldwide. In this case, the more the better. We would like to especially thank Kevin Huang the Founder, President and all-around powerhouse of CORD for the invitation to attend. Also, Dr. Adam Resnick Director of Data-Driven Discovery at Children’s Hospital Of Philadelphia and Vivian Larsen of Takeda both of which expressed much interest in our KCNQ2 efforts
As of now, China has just recently identified rare diseases as a cause for action and has completed a list of 147 rare diseases that the government will pay for treatments. Unfortunately, KNCQ2 is not on that list yet, but we will be working hard to convince the Chinese government to add KCNQ2 to the list.
The Chinese Organization for Rare Disorders (CORD), established in 2013, is a non-profit organization specializing in rare diseases. CORD works to promote exchange and cooperation among rare disease patients and organizations, medical specialists, pharmaceutical companies and governmental agencies. It is committed to enhancing public understanding of rare diseases, improving patients’ access to orphan drugs, fostering the formulation of rare disease policies, and initiating international exchange and cooperation. Today, CORD is the largest patient advocacy organization in China. KCNQ2 Cure is proud to build links with CORD and other rare disease organizations in China and hopes to build bridges with the KCNQ2 community in China and around the world.