The Natural History Study for Rett syndrome – 5 more years

The Natural History Study for Rett syndrome is funded for 5 additional years. Rettsyndrome.org will take a central role in this endeavor as a member of the Coalition of Patient Advocacy Groups (CPAGs) within the Rare Disease Clinical Research Network, and as administrative partner of this 5-year cooperative agreement.

The University of Alabama at Birmingham received a cooperative agreement U54 award from the National Institute of Child Health and Human Development to conduct this work within the ORDR/NCATS led Rare Diseases Clinical Research Network (RDCRN).

This award will investigate longitudinal natural history and neurobehavorial assessments, biomarkers, outcome measures, and neurophysiological and neuroimaging correlates of disease severity in Rett syndrome, MECP2 Duplication disorder, CDKL5 disorder, and FOXG1 syndrome.

The traveling sites have been replaced by permanent sites; doctors at these 11 sites will do their own data collection, during a regular clinic appointment.

Visit: http://www.rettsyndrome.org/research-programs/clinical-trials-and-databases/rett-syndrome-natural-history-study

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Iceberg Theory: Counselling Below the Surface - in Melbourne, Sydney, and Brisbane - workshops with Benjamin Wolfe in early 2015

Working with patients/clients/residents or their families prior to, or after, the expected, sudden, or traumatic death of a loved one is challenging. As physicians, nurses, therapists, counsellors, chaplains or social workers – whatever our professional role – we need to remind ourselves: 'What we see is not always obvious!'

This workshop will provide strategies and interventions to help individuals and families trying to cope with the opportunities and struggles on the 'loss' journey. This interactive workshop will explore clinical interventions dealing with loss in its broadest sense, factors that influence grief, and family make-up and communication styles.

Additionally, the day will remind us that we too are changed by the work we do.

More: http://www.grief.org.au/education/wolfe

May Institute's Annual Clinical Conference (on ASD), 4th December 2014 in Randolph, MA, USA

'Autism Spectrum Disorder: Advances in Neuroscience, Language, Technology, and Evidence-Based Practices'

This one-day conference addresses innovative and cutting-edge developments from the fields of psychology, medicine, and neuroscience for the assessment, education, and treatment of children, youth, and adults with ASD.

Thursday, December 4, 2014, 8:15am - 4:00pm

May Institute, Distance Learning Center
41 Pacella Park Drive, Door 1 Randolph, MA 02368

More: http://www.mayinstitute.org/events/calendar.html?id=1013

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European Economic & Social Committee public hearing on Electromagnetic Hypersensitivity - report

ehsmeet2 Electromagnetic hypersensitivity (EHS) is causing distress and loss of quality of life to a growing number of Europeans and according to new estimates, between 3 % and 5% of the population are electro-sensitive.

The most common sources of Electromagnetic Radiation (EMR) pollution are mobile phone masts, cordless phones and Wi-Fi routers installed in the homes. All these emit microwaves permanently (24/7) in the places where they are installed.

The public meeting on 4th November 2014 was attended by about 50 people with a working group meeting in the afternoon to decide on how best to move forward on the EHS issue. The group think the European Commission should pay more attention to this issue.

Each day the number of EHS sufferers increases, and they often have to deal with the scepticism of doctors and misdiagnoses.

According to new estimates, between 3% and 5% of the population are electro-sensitive, meaning that some 13 million Europeans may suffer from this syndrome.

More on this from: http://www.powerwatch.org.uk/news/2014-11-04-eesc-ehs.asp

European Economic & Social Committee: http://www.eesc.europa.eu/?i=portal.en.events-and-activities-electromagnetic-hypersensitivity