KCNQ2 Cure actively engages with other parent advocacy organizations, medical research organizations, biopharmaceutical companies, and healthcare investors. We welcome the opportunity to collaborate.
Pairnomix, LLC is dedicated to deepening the understanding of rare diseases through the scientific investigation of an individual’s genetic makeup in a laboratory environment. We pair our expertise in rare disease genomics with advanced analytics to provide their health care professionals with a report that is highly personalized. With commitment from international leaders in the fields of neurology and genetics, we will initially focus on helping people living with epilepsy and then expand to other conditions.
JAX® Mice are the highest quality and most-published mouse models in the world. Take advantage of our large inventories of common inbred strains and the convenience of having your breeding and drug efficacy needs met by the leading experts in mouse modeling.
The Rare Epilepsy Network, or REN for short, is a collaboration between the Epilepsy Foundation, RTI International, Columbia University and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN will establish a registry of these patients which includes patient or caregiver-reported data in order to conduct patient-centered research.
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009, with just a few rare disease parent advocates and foundations, has since grown to over 500 global organizations.
The mission of the TGen Foundation is to positively impact the lives of patients and their families. We do this by raising funds that accelerate TGen’s efforts to make and translate genomic discoveries into advances in human health.
Our goal is to build partnerships among researchers and families. By linking a person or family with epilepsy caused by a particular gene with a researcher, possibly on the other side of the world, who is studying that gene, we envision patient-scientist research teams that will enable the genetic causes of epilepsy to be more quickly understood, bringing treatments and possibly cures to more people with epilepsy.