Clinicians and Researchers
Dr. Antonie Kline
Harvey Institute for Human Genetics, M.D. Director of Clinical Genetics; Greater Baltimore Medical Center
We are grateful to collaborate and advocate with Dr. Kline as she advances HNRNPK (Au-Kline Syndrome) research and community knowledge and resources.
Dr. Kline brings a deep personal commitment to our mission, fueled by her experiences as a parent of her son, Donny, who has been diagnosed with HNRNPU. This journey has profoundly shaped her understanding of the challenges faced by families navigating the complexities of rare neurological disorders, so she is dedicated to taking one intentional step at a time to help amplify the voices of those affected and to drive awareness, research, and support for innovative treatments. Dr. Kline shares the passion that by fostering collaboration among researchers, healthcare professionals, and families, we can catalyze meaningful advancements that will improve the lives of individuals living with HNRNP-Related Neurodevelopmental Disorder.
Community
The Yellow Brick Road Project
The Yellow Brick Road Project is a charitable foundation whose mission is to fund research to identify, understand, treat, and ultimately cure those impacted by HNRNPH2 mutations. They do this by funding initiatives to identify more individuals with HNRNPH2 mutations, connecting families impacted by HNRNPH2 in order to contribute to the understanding of the disorder, raising awareness of HNRNPH2 mutations in the general public and scientific communities, and by funding research into HNRNPH2 mutations.
The Yellow Brick Road Project
The Yellow Brick Road Project is a charitable foundation whose mission is to fund research to identify, understand, treat, and ultimately cure those impacted by HNRNPH2 mutations. They do this by funding initiatives to identify more individuals with HNRNPH2 mutations, connecting families impacted by HNRNPH2 in order to contribute to the understanding of the disorder, raising awareness of HNRNPH2 mutations in the general public and scientific communities, and by funding research into HNRNPH2 mutations.
Global Genes
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. The HNRNP Family Foundation, along with over 750 other rare genetic disorder organizations, have partnered to provide resources for the rare disease community.
Rare Epilepsy Network (REN)
REN is a volunteer network that welcomes all rare epilepsy organizations to come together around research efforts where our collective efforts will improve the lives lived of our individual constituents. REN includes rare epilepsy organizations and broad epilepsy stakeholders committed to this common mission.
Rare and Ready Coalition
Rare and Ready Coalition brings together patients with rare and genetic conditions and offers connections with clinicians, researchers, and other helpful resources. The coalition believes policies must make sure that patients with rare or genetic conditions can get the care they need. HNRNP Family Foundation joined the coalition this past year, 2024.
UPenn Orphan Disease Center and JumpStart Program
The UPenn Orphan Disease Center is helping with our iPSC storage and distribution!
The Orphan Disease Center's JumpStart program serves to establish and progress research agendas in emerging and neglected rare diseases. The JumpStart program works closely with patient groups and foundations, pharma and biotech, and the academic community to drive therapeutic development for rare diseases.
CURE Epilepsy
CURE Epilepsy is the leading nonprofit epilepsy research organization investing in unmet research needs and setting in motion groundbreaking advances that will lead to a cure.
We work with Cure Epilepsy on funding projects.
