Westminster Virtual Rare Disease Day 2022 Reception

23 February 2022

Nerve Tumours UK joined the annual international event aimed at raising awareness and highlighting the needs of people with rare diseases.

There are over 6000 rare diseases affecting over 3.5 million people across the UK.

Collectively, rare diseases are not rare.

Today, the rare community came together to raise awareness of the common issues affecting those living with rare conditions.

We joined the Westminster Rare Disease Digital Forum, chaired by Liz Twist, MP and Chair of the APPG on Rare, Genetic and Undiagnosed Conditions, and hosted by the Genetic Alliance.

We heard from people affected by rare conditions, discussing the progress of the National Plans for Rare Diseases, which are due to be launched this year.

Maria Caulfield, the Minister responsible for rare conditions, spoke on the future for rare conditions.

The Neurofibromatosis community was represented by Dexter Parker who has Neurofibromatosis Type 1, giving insights on how the condition affects his daily life,

now a young aspiring student and a story of determination and hope. Thank you Dexter for your support.

Watch his address to the reception here

Stay tuned on our social channels for Rare Disease Day 2022 on Monday 28th February

Westminster Virtual Rare Disease Day 2022 Reception

Nerve Tumours UK joined the annual international event aimed at raising awareness and highlighting the needs of people with rare diseases.

There are over 6000 rare diseases affecting over 3.5 million people across the UK.

Collectively, rare diseases are not rare.

We joined the Westminster Rare Disease Digital Forum, chaired by Liz Twist, MP and Chair of the APPG on Rare, Genetic and Undiagnosed Conditions, and hosted by the Genetic Alliance.

Maria Caulfield, the Minister responsible for rare conditions, spoke on the future for rare conditions.

The Neurofibromatosis community was represented by Dexter Parker who has Neurofibromatosis Type 1, giving insights on how the condition affects his daily life,

now a young aspiring student and a story of determination and hope. Thank you Dexter for your support.

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Centre for Appearance Research - Parent Support Materials Study

Centre for Appearance Research - YP Face IT

Counselling support from Changing Faces

Nerve Tumours UK Community Survey

Suzi’s NF2 story

Emma’s Story

Tim’s Story: Living With Neurofibromatosis – it’s a family thing

Dalvinder’s 100km Ultra Challenge for NF

Diana’s One Month of Rowing for Neurofibromatosis

Nerve Tumours UK joined the annual international event aimed at raising awareness and highlighting the needs of people with rare diseases.

There are over 6000 rare diseases affecting over 3.5 million people across the UK.

Collectively, rare diseases are not rare.

We joined the Westminster Rare Disease Digital Forum, chaired by Liz Twist, MP and Chair of the APPG on Rare, Genetic and Undiagnosed Conditions, and hosted by the Genetic Alliance.

Maria Caulfield, the Minister responsible for rare conditions, spoke on the future for rare conditions.

The Neurofibromatosis community was represented by Dexter Parker who has Neurofibromatosis Type 1, giving insights on how the condition affects his daily life,

now a young aspiring student and a story of determination and hope. Thank you Dexter for your support.

Filter News

Search by keyword

Filter by Date

Category

Centre for Appearance Research - Parent Support Materials Study

Centre for Appearance Research - YP Face IT

Counselling support from Changing Faces

Nerve Tumours UK Community Survey

Suzi’s NF2 story

Emma’s Story

Tim’s Story: Living With Neurofibromatosis – it’s a family thing

Dalvinder’s 100km Ultra Challenge for NF

Diana’s One Month of Rowing for Neurofibromatosis

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

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

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

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

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

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

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

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

NF2 Working Together: from a tentative diagnosis and beyond

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

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

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

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

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

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

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

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

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

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

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