Dr. Genevieve Konopka, UT Southwestern Medical Center, is a leading world expert on the FOXP1 gene. She explained the FOXP1 gene therapy experiment her team is completing this year.

17 Feb 2024 International FOXP1 Foundation annual Open House zoom meeting. The board members report what the foundation did last year, and what their plans are for the coming year.

Zoom meeting, March 13, 2022 The International FOXP1 Foundation (IFF) has partnered with RARE-X to establish a Data Collection program. RARE-X introduces families to the value and benefits of contributing; database security and architecture of the system; and the process to enroll in the program. Questions were answered at the end of the presentation.

Dr Ruth Braden, Early Career Academic, The University of Melbourne; Postdoctoral Research Fellow, Speech and Language Group, Murdoch Children’s Research Institute. Presentation at the International FOXP1 Foundation Family Conference June 2023.

Dr Alex Kolevzon, Clinical Director Seaver Autism Center for Research and Treatment. Professor Psychiatry and Professor Pediatrics presentation at the International FOXP1 Foundation Family Conference 2023

Dr Cora Taylor, Assistant professor and clinical psychologist at Geisinger Autism & Developmental Medicine, her presentation at the International FOXP1 Foundation Family Gathering 2023

Sandra M Gumerove, Attorney at Law. Serving individuals and families with special needs in Long Island, New York. presentation at the International FOXP1 Foundation Family Conference 2023.

A team of researchers at the Seaver Autism Center at the Icahn School of Medicine at Mount Sinai in New York has been providing evaluations and clinical research for families of other genetic syndromes for some time now, and has recently begun working with FOXP1 families. In this RareConnect webinar, we will have a chance to hear from these investigators and to ask them questions about their work, how it could benefit us and their future plans for FOXP1 research. Download the slides and meet other families with FOXP1: https://www.rareconnect.org/en/community/foxp1/article/foxp1-community-webinar

Zoom meeting, January 16, 2022 The International FOXP1 Foundation (IFF) hosted their first Open House zoom meeting, open to all members of the FOXP1 international community.  The Board of Directors presented what has been achieved in the first year of the foundation, and what is planned for the coming year. Questions were answered at the end of the presentation.

Playback: Watch the Seaver team present the Center's clinical and stem cell research on FOXP1 Syndrome with special guest speaker, Dr. Genevieve Konopka, who discusses cell-specific targets in early brain development.

Webinar, July 9, 2022 Chardell Buchanan, registered dietitian nutritionist and coach, shared her advise on how to make it easy to prepare healthy meals and snacks for your family. She talks about importance of a balanced diet with many good tips on how to incorporate whole grains, fibres, omega-3, vitamins and water in your families diet. To learn more about Chardell's dietary tips check out her website www.ChardellBuchanan.com

Global Genes/RARE-X Sr Director of Scientific Programs Karmen Trzupek explains how to upload genetic reports in the Data Collection Program.

Privacy is something RARE-X takes seriously. Managing issues of data privacy and security are big tasks. Most rare disease patient organizations do not have the expertise, staff, and financial wherewithal to navigate the complex legal, technical, and policy landscape of privacy. This video shows the steps RARE-X takes to ensure patient privacy and security.

What are the benefits to you and researchers when you participate in rare disease Data Collection Program? In this video, you'll learn more about how your participation in a Data Collection Program can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries.

When an organization begins to collect patient data, there may be a great deal of focus on such things as how to find patients, what questions to ask, and how to make sure that the data that is gathered can address the types of questions researchers want answered. Data governance is one of those issues that can seem a bit technical and take a back seat to some of the more obvious issues that drive a patient organization to collect data in the first place. In reality, though, good data governance is an essential part of data gathering and sharing, and organizations need to be thoughtful from the start to get this right. This RARE-X Definition Series Video explains what Data Governance is and why it is important.

The RARE-X Data Standards Program works deliberately to identify existing standards and address issues when they don’t exist. To ensure data is as useful as possible, RARE-X believes it’s important to get this right from the start rather than having a data analyst waste precious time taking data and reformatting it so it can be used with other data sets. Learn more about the importance of getting Data Standards right and what RARE-X is doing to make quality Data Standards possible.