Kabuki Syndrome Information Day (March 16, 2024)

February 7th 2024

MRCC and Kabuki UK Unite for the Pioneering 2024 Kabuki Syndrome Information Day

 

At the Manchester Rare Conditions Centre (MRCC), our core mission is to improve the lives of those living with rare conditions. In line with this, we are delighted to announce our partnership with Kabuki UK for the forthcoming 2024 Kabuki Syndrome Information Day. Set against the backdrop of the Manchester Centre for Genomic Medicine and the University of Manchester, this event, marks a significant stride in our continued commitment to this cause.

Following the resounding success of the inaugural event in 2019, Kabuki UK are poised to make the 2024 Information Day an enriching experience for all attendees. Professor Siddharth Banka, Clinical Director at MRCC, articulates the spirit of this collaboration: “Our alliance with Kabuki UK for this Information Day is a testament to our dedication to fostering advancements in rare conditions. It’s an opportunity to share knowledge, inspire hope, and drive innovation in the field of rare conditions.”

Sally Trewartha, Chairperson of Kabuki UK and mother of Harry with Kabuki syndrome, echoes this sentiment: “We are thrilled to partner with MRCC, bringing together families, researchers, and specialists. This day is not just about learning; it’s about building a community that supports and understands the unique journey of those affected by Kabuki syndrome.”

The Information Day, scheduled for Saturday, 16th March 2024, is poised to be a melting pot of knowledge, research, and shared experiences. It’s an unparalleled opportunity for attendees to immerse themselves in the latest global research, comprehend the nuances of the syndrome, and interact with leading specialists who are otherwise beyond reach.

The Kabuki Syndrome Foundation (KSF) will also play a pivotal role during this event. With a mission to advocate for individuals with Kabuki syndrome by driving patient-centred research, KSF actively works towards finding treatments that significantly improve the lives of those affected. At the Information Day, KSF’s own Director of Research: Dr. Clara Tang, will discuss the latest developments in research and the critical role of patient engagement in fostering therapeutic innovations.

Dr. Clara Tang highlights the importance of this day: “It’s a rare convergence of minds and expertise. We aim to translate our research into tangible benefits for those affected by Kabuki syndrome, and inspire patients and their families to get involved in research opportunities.”

Jessica McAndrew, KSF Marketing Chair and mother to Aidan with Kabuki syndrome, adds, “This day is about empowerment, about breaking down barriers to research and clinical expertise that are often out of reach to many families. It’s about sharing, learning, and advocating for the advancements that can transform lives.”

The event is supported by the We R Rare Patient and Public Involvement Group of the Rare Conditions theme in the  NIHR Manchester Biomedical Research Centre and the MRCC. Experts from the newly established EpiGenRare Node in the UK Rare Disease Research Platform will speak at the event.

The day promises a comprehensive agenda, starting with discussions on clinical issues specific to Kabuki syndrome, transitioning into an enlightening afternoon focused on research and treatment developments, and culminating in a dynamic question and answer session with our esteemed experts.

As a virtual centre based at the Manchester Foundation NHS Trust, with partners locally, nationally, and globally, MRCC is dedicated to the coordination of clinical care, research, education, and engagement. This Information Day is a reflection of our commitment under the 2021 UK Rare Diseases Framework and our unwavering dedication to the rare conditions communities.

Stay tuned for more updates and details on this event. Together, let’s shape the future of rare condition care and research.

For more information on the Information Day, please visit the Event website: https://bit.ly/3Utxud0

Follow the MRCC on X @mft_iMRare and on the website https://www.mrcc.org.uk/