Kabuki Syndrome Foundation Participates in Manchester Rare Conditions Centre Anniversary
Pictured, from left to right: Dr. Siddharth Banka, Jessica McAndrew, Matt McAndrew, and Dr. Clara Tang.
The Kabuki Syndrome Foundation was honored to be invited to speak at the second anniversary celebration of the Manchester Rare Conditions Centre (MRCC), in Manchester, United Kingdom this July. Representing KSF, Marketing Chair Jessica McAndrew and Director of Research Dr. Clara Tang delivered impactful speeches, highlighting the foundation’s ongoing efforts in advocating for individuals with Kabuki syndrome and funding research to find treatments.
Celebrating the success of MRCC and its aim to improve the lives of people with rare conditions, the day focused on a broad spectrum of rare conditions, attracting a sold out audience including leading minds in the field of rare diseases. The event was hosted by Dr. Siddharth Banka, Professor of Genomic Medicine and Rare Conditions, who also serves on KSF’s Medical & Scientific Advisory Board.
The day commenced with opening remarks by Kathy Cowell, OBE, from the Manchester University NHS Foundation Trust. She was followed by Kath Bainbridge, Head of Rare Diseases and Emerging Therapies at the UK Department of Health and Social Care, who elaborated on the UK’s Rare Disease Framework and action plan.
KSF’s Contributions
Jessica McAndrew, the only parent of a child with a rare disease invited to speak, shared a poignant account of her son’s journey with Kabuki syndrome. Her speech highlighted the vital role of patient organizations in the landscape of rare conditions.
“I was honoured to share my son’s story and illustrate the pivotal role that patient organisations like KSF play in advocating and supporting individuals and families living with rare disease. KSF has played a huge role in our lives since getting my son’s diagnosis, as they’re the only Kabuki syndrome organisation funding research to find treatments,” Jessica remarked. “It was an honour to represent KSF and raise awareness of Kabuki syndrome to such an influential UK audience.”
Dr. Clara Tang followed with an insightful discussion on how KSF is funding research grants, and advocating for patients across every touch point of the drug discovery process. “Our mission at KSF is not only to support patients and their families but also to unify researchers and clinicians so that we can discover effective treatments for Kabuki syndrome faster,” Dr. Tang stated.
The event was a resounding success, with tickets sold out and attendees deeply engaged. We were thrilled to be part of this successful event and look forward to continuing our collaboration with the Manchester Rare Conditions Centre.
For more information about potential treatments that KSF is working to bring from the lab to patients, please visit the Research section of our website. Developing treatments for this rare disease is made possible by the generous donations from our community, their family, and friends. To donate in GBP, USD or CDN, please visit our Donate Page.