Malignant Peripheral Nerve Sheath Tumours (MPNST)

Also Known As:

  • Malignant Schwannoma
  • Neurofibrosarcoma
  • Neurosarcoma
  • Schwannoma Carcinoma

 

Why is RareCan interested in MPNST and Neurofibrosarcoma?

RareCan is working to accelerate research into Malignant Peripheral Nerve Sheath Tumours (MPNST), Neurofibrosarcoma, and Neurosarcoma by making it easier for researchers to connect with people who have these forms of cancer. You can help us do this by becoming a RareCan member and sharing information with us about your diagnosis. We will then get in touch with you about any research opportunities that might be suitable for you.

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What is MPNST?

A Malignant Peripheral Nerver Sheath Tumour (MPNST) is a type of rare cancer that develops in the connective tissue that surrounds nerves. Because of its behaviour and origin, it is classed as a Sarcoma.

MPNST is also known as Schwannoma Carcinoma, Malignant Schwannoma, Neurosarcoma and Neurofibrosarcoma.

How rare are Malignant Peripheral Nerve Sheath Tumours?

MPNSTs occur in 0.001% of the general population which makes them quite rare. Although rare, they are one of the most common soft tissue sarcomas in children. 

Who does MPNST affect?

MPNSTs mainly affect adults but children can get them too. About half of all cases of Malignant Nerve Sheath Tumours are diagnosed in people who have Neurofibromatosis, which is a group of conditions in which tumours grow in the nervous system. 

Useful Links:

If you have a Malignant Peripheral Nerve Sheath Tumour/Neurofibrosarcoma/Neurosarcoma/Malignant Schwannoma/Schwannoma Carcinoma and are looking for support, we recommend the following websites:

Nerve Tumours UK

Nerve Tumours UK is a charity that provides crucial support for people affected with nerve tumours, including malignant peripheral nerve sheath tumours. 

Sarcoma UK

Sarcoma UK is a charity that offers a wide range of support for people with sarcomas, including MPNST.  

OPPORTUNITIES FOR MPNST MEMBERS

BioResource

The RareCan BioResource

Donating your samples for medical research

Joining RareCan gives you the ability to donate your tissue samples to the BioResource for medical research. Please note that signing up to RareCan does not commit you to donating tissue and you can cancel your membership at any time. If you have Malignant Peripheral Nerve Sheath Tumours and would like to find out more, please click the button below.

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