Our next conference will take place in Ann Arbor, Michigan, USA in June of 2026.

Please contact us at info@kares.foundation to gain access to all conference videos.

A Global Gathering for Families, Researchers & Clinicians

The inaugural KARES Family & Science Conference was held in San Antonio, TX and virtually June 8, 2024. This gathering provided an opportunity for patients, caregivers, clinicians, researchers and scientists from all over the world to share experiences and build community around KDM5C genetic variants.

This was the first time our families had gathered in person since the Rare Disease Day event in 2020 at Albert Einstein College of Medicine. Since then, KARES was formed, and we’ve made big strides in expanding our community. 144 participants connected with one another, giving all of us a renewed sense of inspiration to expand and accelerate our work for the future!

  • TBD for 2026

  • Please contact info@kares.foundation with specific conference-related questions.

Schedule of Events

  • This conference will allow patients and caregivers to:

    o Develop a better understanding of our KDM5C registry and data collection options and why enrollment is so important

    o Recognize the critical importance of basic and clinical research in the understanding of KDM5C-related disorders and the development of therapeutics

    o Learn about the research funded by the KARES Foundation’s Research Grant Program

    o Learn how to manage and treat their own or their loved one’s symptoms

    For Clinicians and Researchers:

    o Understand the spectrum of genotypic and phenotypic features of KDM5C-related disorders

    o Gain a better understanding of how their patients' symptoms fit into the landscape of KDM5C-related disorders so they can properly support their patients

    o Develop a broader understanding of options in treating patients after connecting with other clinicians and sharing experiences

    o Learn critical updates from KDM5C researchers, clinicians, and families and innovative ideas to advance research on KDM5C variants

    o Gain a deeper appreciation of the importance of their work by listening to the real-life experiences of patients and caregivers

    o Learn about the research priorities that KARES is supporting and connect with other researchers working on KDM5C-related research

  • The KARES Foundation has a limited number of stipends to award to KDM5C-affected individuals and families who might otherwise not be able to attend the Family & Science Conference. Stipends will be reimbursed by KARES staff AT the conference with proof of expenses. Stipends can cover conference registration fees, hotel accommodations, and travel expenses. Domestic and international applicants are welcome. You will be notified by February 29, 2024 if you will receive a travel stipend. Apply below!

  • CANCELLATION POLICY

    Cancellations with refunds for conference registration fees will be considered on a case-by-case basis before May 15, 2024. Cancellation requests received after this date are non-refundable. If we need to cancel or reschedule the conference, all conference registration fees will be fully refunded.

    We want to be as flexible and understanding as possible, but we also have to fulfill our hotel contract obligations. Refunds will not be provided for conference no-shows who have not gone through the above cancellation process. For questions, email info@kares.foundation.

    PRIVACY

    Your personal data will be collected to manage your registration and participation in connection with the conference and will be shared with the KARES Foundation and with vendors who are coordinating the logistics for the conference. Your personal information will not be shared in any other way, and the KARES Foundation never sells your data.

    PHOTO RELEASE

    The KARES Foundation intends to take photographs and videos of the Conference events for use in KARES promotional materials in print, electronic and other media, including the KARES Foundation website, email distribution lists, and social media accounts. By participating in the Conference, you grant the KARES Foundation the right to use any image, photograph, voice, or likeness, without limitation, in its news, promotional materials, and publicity efforts.

    CONDUCT

    We value the participation of each community member and endeavor to deliver an enjoyable and fulfilling experience. Conference participants are expected to conduct themselves with integrity, courtesy, and respect for others and maintain the highest level of professionalism at all conference programs and events. All attendees, speakers, organizers, volunteers, vendors, and staff at the Conference are required to observe the following Code of Conduct: the KARES Foundation is dedicated to providing a harassment-free conference experience for everyone, regardless of gender, sexual orientation, disability, physical appearance, body size, race, or religion. We do not tolerate harassment of conference participants in any form. All communication should be appropriate for a professional audience, including people of diverse backgrounds and cultures. Be kind to others. Participants violating these rules may be asked to leave the Conference at the sole discretion of the KARES Foundation.

    COVID-19

    By attending the KARES Family & Science Conference, you voluntarily assume all risks related to exposure to COVID-19. We strongly encourage attendees to be vaccinated and receive their booster shots when applicable before attending the conference.

    We also strongly encourage individuals to be tested for COVID-19 before traveling to the conference. Individuals who test positive should stay home and cancel their registration.

    For questions regarding these policies, don't hesitate to contact us at info@kares.foundation.