by PURA Syndrome Foundation | Jun 20, 2024 | Annual Conference
Dr. Pons will speak at the conference about the work being done at Jackson Laboratories to create mouse models for PURA Syndrome researchers. In-person registration: https://purasyndrome.networkforgood.com/…/65425-2024… Virtual registration:...
by PURA Syndrome Foundation | Jun 20, 2024 | Annual Conference
Jean and Kyle will be at the conference this year to share their experiences as parents and Co-Founders of Jack’s Tomorrow, including the recent research projects they have been funding to understand the disease and bringing us closer to a treatment and a cure for...
by PURA Syndrome Foundation | Jun 20, 2024 | Annual Conference
Dr. Jiang is a physician scientist, active practicing physician at Yale Children’s Hospital and Yale Hospital and Director of Yale National Organization of Rare Disease Center of Excellence for Rare Diseases. Jiang’s research program focuses on to investigate...
by PURA Syndrome Foundation | Jun 19, 2024 | Annual Conference
Dr. Janowski will share the team at Helmholtz’s recently published findings that reveal the details of structural and functional analysis of the PURA protein and its selected variants implicated in PURA Syndrome. He will present the methods employed in their lab...
by PURA Syndrome Foundation | Jun 18, 2024 | Annual Conference
Dr. Dengle Sanchez brings a unique perspective to this year’s conference with her combination of experience with PURA Syndrome from a physician’s and a parent’s perspective. We are excited to have her participating in our Clinician Q&A Panel. In-person...
by PURA Syndrome Foundation | Jun 18, 2024 | Annual Conference
Dr. Hunt co-authored several peer-reviewed articles about PURA syndrome, including one of the first two papers characterising PURA Syndrome in October 2014. He will speak at the conference about how far we’ve come over the last 10 years, as well as, join our...
