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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

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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 Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date.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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Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

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

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

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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

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