News archive

The ten most asked questions of 2011
As it’s the time of the year where people put together lists we thought you might be interested in the ten most asked questions from website, phone and email in 20111 – and the answers of course! (read more)

Update on narcolepsy and Pandemrix.
We have prepared an update on the situation regarding  the diagnosis of narcolepsy following Pandemrix administration. (read more)

Shortage of Ritalin limited to USA.
Members may have heard about a shortage of Ritalin in America. (read more)

Changes to Pandemrix information.
The CHMP has recommended changes to the information on Pandemrix on the basis of a preliminary review on the association between this H1N1 influenza vaccine and the development of narcolepsy. (read more)

Does amphetamine increase risk of developing Parkinson's Disease?
A recent study presented at a scientific meeting suggests that there may be a link. (read more)

Provigil should not be given to the under 18s.
Recent guidance from the MHRA states that modafinil should not be give to patients under the age of 18 and to certain other groups of patients. (read more)

Narcolepsy and the H1N1 'flu vaccine.
An update on recent developments regarding a possible relationship between H1N1 'flu vaccination and the development of narcolepsy. (read more)

New Rare Disease UK report highlights patients experiences.
A new Rare Disease UK report highlights a number of worrying issues experienced by patients and families affected by rare conditions. The report, Experiences of Rare Diseases: An insight from patients and families, deals with the views and experiences of 600 patients and families affected by over 100 different rare conditions. (read more)

The science of sleep: hope for narcolepsy sufferers.
Claire Allen once laughed so much at a friend's joke, she fell down in the middle of a road. Another time, she attempted to jump out and surprise someone – but was so tickled by her plan that she collapsed before even reaching her hiding place. If the 35-year-old scientist, whose case was highlighted in newspaper reports last week, was not on medication, she could drop off 100 times a day. (read more)

Do you have a sleep disorder?
You may not even be aware of it, but most of us suffer - or have suffered - from a sleeping disorder at some point in our lives. In fact, one third of the population suffers from some type of sleeping problem. Typical disorders range from sleep walking, tooth grinding and sleep paralysis to narcolepsy. (read more)

New evidence on the DQB1* gene and sleep problems.
An interesting study was reported in the November issue of Neurology, the medical journal of the American Academy of Neurology. The study looked at people who have the DQB1 gene variant that is closely associated with narcolepsy. However, having the gene variant does not mean that a person will develop narcolepsy. (read more)

European Medicines Agency updates on the review of Pandemrix and reports of narcolepsy.
The European Medicines Agency's (EMA) Committee for Medicinal Products for Human Use (CHMP) has reviewed all available data on the suspected link between narcolepsy and Pandemrix. The Committee concluded that the available evidence was insufficient to determine whether there is any link between Pandemrix and reports of narcolepsy. (read more)

Narcolepsy and the Pandemrix swine flu vaccine.
You will no doubt have heard or seen news that a swine flu vaccine called Pandemrix has been suspected of causing narcolepsy. It is important to understand the full implications of what has happened and how that might affect you. (read more)