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World’s Largest Neurofibromatosis Conference To Be Held In Washington, D.C.

By June 3, 2014December 5th, 2023NF Conference, Press Release


The Children’s Tumor Foundation (CTF) is hosting the 2014 NF Conference/Forum, the largest worldwide meeting dedicated entirely to neurofibromatosis (NF), a genetic disorder that affects one in 3,000 people and can cause tumors to grow anywhere in the body. These tumors may result in serious health issues including vision and hearing loss, learning disabilities, and intense pain. The Children’s Tumor Foundation is the leading nonprofit organization dedicated to funding research into treatments for NF, for which there currently is no cure.

The annual NF Conference is the premier event in the neurofibromatosis research and clinical calendar. The theme for this year’s Conference is “Connecting for a Cure,” which reflects the event’s impressive gathering of clinicians, researchers, and scientists from many different ‘classical’ disease areas, including genetics, neurology, oncology, pediatrics, neurosurgery, orthopedics, and many others. It is an opportunity to share information and build relationships, driven by the goal of ending NF.

This year’s Conference also features the Foundation’s first business satellite meeting – a unique gathering of members of the financial and pharmaceutical industries, as well as clinicians and researchers, who will focus on business opportunities in the NF field.

The patient-focused NF Forum is taking place simultaneously at the Omni Shoreham Hotel, bringing NF patients together for the opportunity to learn more about NF, meet other NF families, and interact with the researchers who are working to end NF. Significantly, this means that all stakeholders in the fight against NF are present — the researchers/clinicians striving for solutions, as well as the patients who are critical partners in finding the best results. This aligns with the Foundation’s focus on creating links among all involved, so as to more efficiently identify treatments for patients.

A key element of the Foundation’s research approach is to facilitate the transition from scientific research and development to clinical benefit for the NF patient. Strategic investments that foster collaboration have in the last two years resulted in the Foundation’s launch of the NF Registry, the NF Biobank, and innovative team science efforts such as the Synodos Consortium, the NF Therapeutics Consortium, and an NF data-sharing platform in partnership with Sage Bionetworks.

Conference/ Forum Highlights

Please visit and for complete agendas of both the NF Conference and NF Forum. Some highlights include:

The Conference/Family Forum combination: all stakeholders – researchers and patients — essential to finding the treatments for NF are together in one place. Friday and Saturday, June 6 and 7.
The Business Satellite Meeting on Monday, June 9 from 2:00 to 4:00 will present the business model of the Children’s Tumor Foundation, the market model for neurofibromatosis, and a top-tier industry panel.
PCORI (Patient Centered Outcome Research Institute) is a multi-billion-dollar national initiative to engage patients in clinical effectiveness research. Speaker: Suzanne Schrandt, JD, Saturday, June 9, 11:55 a.m. to 12:35 p.m.
A number of significant keynote speakers and panelists from throughout the scientific community, including the Director of the National Institutes of Health, Francis Dr. Collins; the deputy director of National Cancer Institute, Dr. Douglas Lowy; the Executive Director of Fastercures (from the Milken Institute), Margaret Anderson; and Dr. Stephen Friend, president of Sage Bionetworks.


Dr. Francis Collins, NIH Director – Saturday, June 7, 8:00 p.m.
Dr. James Gusella, discoverer of NF2 gene – Saturday, June 7, 1:00-2:00 p.m.
Dr. Douglas Lowy, Deputy Director, NCI – Sunday, June 8, 12:15-1:00 p.m.
Dr. Ludwine Messiaen, discoverer of LZTR1 gene – Sunday, June 8, 3:15-4:30 p.m.
Business Opportunities for NF: Satellite Session – Monday, June 9, 2:00-4:00 p.m.

About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF can cause tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and intense and disabling pain. NF affects one in every 3,000 people, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research into neurofibromatosis. In addition to benefiting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. For more information, please visit



Simon Vukelj, Director of Communications
Children’s Tumor Foundation