This weekend the Children’s Tumor Foundation participated with around 100 researchers, clinicians and foundation representatives in the Second International Rasopathies Network Conference in Chicago. The Rasopathies Network was conceived through a collaboration between physicians focused on, and families affected by, ‘Rasopathies’ – or rare diseases that affect signaling in the Ras pathway. Rasopathies include neurofibromatosis, Noonan’s Syndrome, Costello Syndrome, Cardio-Facio-Cutaneous (CFC) Syndrome and Leopard Syndrome. These rare conditions share many common features, including learning disabilities, and skin and bone manifestations, with impact on quality and span of life. The goal of the Rasopathies Network is to drive collaboration between scientists working on the different rare diseases to accelerate research. The 2011 Rasopathies Network Conference was organized to occur at the end of a six-day schedule of family conferences and clinics for Noonan’s, Costello and CFC families, which made for a busy and informative time. Overall neurofibromatosis research has made significant advances compared to the other rare diseases and we got some good words for our NF Clinic Network and preclinical programs. But we can definitely learn from some of the approaches the other groups are taking, for example to develop patient health records, and to improve clinical care guidelines. As candidate drugs emerge, it is likely that they will have applicability across many of these rasopathies therefore ongoing communication is vital as the research moves forward. At the close of the weekend CTF and the NF Network (formerly NF Inc) jointly participated in a small NF Symposium for local attendees where Alcino Silva (UCLA) and Maria Acosta (Children’s National) gave updates on learning disabilities research and trials; I presented some highlights from the recent 2011 NF Conference; and Kim Bischoff (NF Network) gave a presentation on the importance of advocacy for NGF research funding.
We looks forward to the 2013 meeting of this group, and to future collaborations with the Rasopathies Network and to both sharing our knowledge and learning a lot!
The Rasopathies Network – Related Diseases Join to Advance Research
