Helpline 07939 046 030
Freephone 0300 102 17 22*

2019 NF Conference

18 September 2019

2019 NF Conference

The Children's Tumor Foundation holds its 2019 Neurofibromatosis Conference this weekend, commencing 21st of September 2019, at the Hyatt Regency in San Francisco. Lasting until Tuesday, the conference will play host to a number of the world's leading authorities on NF, including a number of our Medical Advisory Board. Amongst the headline speakers will be Professor Gareth Evans, Chair, Nerve Tumours UK Medical Advisory Board, Professor Ros Ferner and Dr Shruti Garg. 

We continue to work very closely with the Children's Tumor Foundation on joint initiatives to raise awareness of Neurofibromatosis around the globe.   

Professor Rosalie Ferner is the first to speak on the 22nd of September about Diagnostics and Imaging at 13:45 US time (21:45 UK time).

Professor Gareth Evans is then set to speak the following day at 14:00 US Time (22:00 UK time) about the Genetics of NF2 and Schwannomatosis

Dr Shruti Garg is then the last of our UK based speakers who will be speaking later that day about Clinical Science Platform Presentations at 17:15 US time (1:15 UK time). 

Professor Gareth Evans, Professor Ros Ferner and Dr Shruti Garg will all be in attendance

Each day, headed by a keynote speaker, will offer up a range of sessions in which various important topics and research will be discussed amongst numerous medical professionals.

  • Day 1 will be centred around clinical care, the natural history of NF, and the psychosocial issues surrounding NF patients.
  • Day 2 will be largely focused on cancer, including the predictions of future prevention and curing of cancer, the diagnostics and imaging of cancer, and the mechanisms of NF2 loss-driven Tumorigenesis.
  • Day 3 will look at the advances in Neurobiology and Neuropathic pain, metabolic rewiring in NF2 Mutant Tumors, Cutaneous Neurofibromas, Genetics of NF2 and Schwannomatosis, and the targeting of gene editing and gene therapy for NF 
  • Day 4, the final day will be a much shorter day in which there will be a lengthy discussion on animal models before the second "Hackathon Outcome" is discussed


Hackathon:

"The Children’s Tumor Foundation (CTF), the Neurofibromatosis Therapeutic Acceleration Program (NTAP), Sage Bionetworks, and the Silicon Valley AI group (SVAI) are excited to announce the second Neurofibromatosis (NF) hackathon that will be held in San Francisco in concomitance with the 2019 CTF Patient Forum and NF Conference.  After the first NF2 hackathon organized by Onno Faber in 2017, the this new event will focus on analyzing diverse datasets including genomic, drug screening, drug-target association, imaging, and other data for all three conditions of NF (NF1, NF2, Schwannomatosis).

The goals of the NF Hackathon are: 1) to make use of the data that our researchers and scientists have already produced, 2) to incentivize data sharing as a powerful practice that will allow researchers to move at a faster pace and create new insights, and 3) to create innovative collaborations between diverse disciplines.

The hackathon is going to be collaborative in nature, with teams working on one or multiple tracks in a collaborative spirit, but still competing to find the best answer to the questions with the support of NF experts and technology experts to act as mentors and guides. The teams will assemble on the first day and will have 48 hours to present their work to a committee that will judge their work.

The winning teams will be presenting their findings during this session."


For more information on the conference itself then please visit the website by following the link below: 

Filter News

Filter by Date
Category
Reset

Irfan’s Story

Read More

Kelly’s Story

Read More

Gisela’s Story

Read More

Advice for Students with NF1, NF2-Schwannomatosis, and Schwannomotosis

Read More

Ella’s Story

Read More

Georgia’s Story

Read More

Nottingham NF1 INFormation Day 2024 A Big Thank You

Read More

Quality of Life Survey

Read More

Advice: Travelling With NF

Learn how to navigate travel with NF confidently. Essential tips and resources for smooth, stress-free journeys by train, pla

Read More

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK