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external identifier
227530
UK Government and Parliament Id
227530
e-petition UK Government and Parliament Id
227530
action
Fund research and treatment for Neurofibromatosis tumours
background
It was announced at NF Conference that over half of the patients in the Selumetinib trial saw significant reduction in tumour size of their inoperable plexiform neurofibromas. http://www.ctf.org/news/selumetinib-granted-orphan-drug-designation-by-the-fda-for-nf1 Seeing is believing
additional details
My daughter has one in her neck that can’t be removed but has almost killed her a few times and they are others out there. If the result was same in adults, it would save NHS on hospital operations and even hospital stays. There are not enough doctors in UK that know enough about the disorder. We’ve lost friends due to NF and I don’t want my daughter to be just another number. She’s scared it will kill her. She has nightmares.
created at
2018-08-19T10:28:48.388000+00:00
updated at
2019-04-29T23:00:04.498000+00:00
closed at
2019-04-29T22:59:59.999000+00:00
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