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Coordinated Care of Rare Diseases Study at UCL

24 March 2021

Coordinated Care of Rare Diseases Study at UCL

CONCORD (Coordinated Care of Rare Diseases) is a research study that looks at how the care of people with rare diseases is coordinated in the UK and how patients, families and healthcare professionals who treat rare diseases would like care to be coordinated. The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with NHS Institutions and charitable partners. Nerve Tumours UK is not involved in any content or development of the study, however, we do support their research. 

The Findings of the study cover the following: 

  • What does coordinated care mean?
  • Is care coordinated in the UK, and how?
  • What type of care coordination do patients, families and professionals prefer?
  • What are the different ways that care can be coordinated for rare conditions?
  • It also looked at how patients and the public have been involved in CONCORD and overarching key findings from CONCORD and next steps.

Watch the Webinar and download the papers below.

Results of UCL Rare Diseases Study

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Nerve Tumours UK Challenge Yourself Week

Find out how you can get involved this summer with some of the biggest and greatest challenge events in the UK

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Andrew’s NF1 Story

Read about Andrews inspirational NF1 story and how he wants to inspire others to achieve their goals!

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Dexter’s NF Documentary Project

Dexter shares his motivations for taking on his NF documentary project & find out how you can watch it

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World NF2 Day 2021 Emily Owen Member of our Board of Trustees Takes over our social

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A Big Thank You to all our Garden Runners!

Find out how our Garden Runners got on this World Neurofibromatosis Awareness Day - May 17 2021

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Centre for Appearance Research (CAR) - Somali Heritage & NF Study

If you are from Somali heritage and have NF, the Centre for Appearance Research (CAR) want to hear from you.

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Shine A Light 2021 Success!

Another incredible year, 92 buildings lighting up blue to Shine a Light on Neurofibromatosis as part of this year’s campaign

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Living Different: Patricks’s NF2 Blog

Read his attempt to build people's understanding of the challenges with disabilities

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Beth’s Novasper Online Dog Show 2021

Find out how you can get involved in this year's fluffiest and loveable online dog show!

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Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

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Masterclasses in NF: Ophthalmologic Findings & Orthopic Eye Examination in NF1 and NF2-Related Schwannomatosis

Ophthalmologic Findings & Orthopic Eye Examination in NF1 and NF2-Related Schwannomatosis

Prof. Dr. Berthold Pemp

OT Sabine Koinig

Masterclasses in NF: Plexiform Neurofibromas in NF1 - General Course and Neuroradiology

Plexiform Neurofibromas in NF1 - General Course and Neuroradiology

Assoc. Prof. Dr. Gregor Kasprian

Dr. Hector Salvador, MD

Masterclasses in NF: The Patients’ Perspective: A Masterclass on NF Care Held by NF Patients

Masterclasses in NF: Treatment Strategies for Vestibular Schwannomas: When to Treat? How to Treat?

Treatment Strategies for Vestibular Schwannomas: When to Treat? How to Treat?

 

Michel Kalamarides MD

Masterclasses in NF: Management Of Plexiform Neurofibromatosis in NF1- Rianne Oosterbrink, Justus L Groen, Karine Lascelles

Masterclasses in NF1: 1.Management Of Plexiform Neurofibromatosis in NF1

Rianne Oosterbrink MD

Justus L Groen MD

Karine Lascelles MD

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