Visit to the Care Home Overduin Sunday, September 18th
On Sunday afternoon, September 18, 2016, following the EHDN Plenary Meeting you will have the opportunity to visit Topaz, the largest and very well organized nursing home for HD patients. This year they are celebrating their 50th anniversary. 14:15 : Buses leaving world forum convention centre 14:30 – 18:00 : Visit to the nursing home […]
Promising research from CHDI’s 2016 Conference – subtiteled in many languages!
[vc_row][vc_column][vc_column_text]In this video ‘Postcard from Palm Springs 2016’, HD family advocate and former NBC reporter Charles Sabine presents highlights from CHDI’s 11th Annual Disease Therapeautics Conference, a Forum for Drug Discovery and Development which ran from February 22nd to 25th this year in Palm Springs California. The message is overwhelmingly positive; a ‘new age of […]
Caregivers of Huntington’s Patients Voice Frustrations with Doctors and Health System
Over on huntingtonsdiseasenews.com Magdalena Kegelby reports that caregivers of people with Huntington’s disease describe themselves as invisible patients in a healthcare system they are profoundly disappointed with, according to a study in the journal Psychiatra Polska. While the study was done in Poland, similar findings in both the U.S. and U.K. indicate that changes in medical […]
New Approach in Chile
Many Enroll-HD sites are located at academic medical centers—institutions with medical schools and teaching hospitals, and often physically linked to elite universities. But the first study site to open in Chile is quite different. It is located at CETRAM, a unique patient-centered clinic in a working-class neighborhood in Santiago, the country’s biggest city. Since it […]
The Youth Connection – HDYO
Life for a young person in an HD family can be tough. At home, there may be responsibilities such as helping with household chores or being involved in caregiving. Outside the home, there’s the constant feeling of being an outsider. While other teens and young adults focus on studies and fun, youth in HD families […]
A FIRST FOR IRELAND – Enroll-HD now underway in Dublin!
Enroll-HD is now up and running in Ireland, the first time the country has joined a large-scale international study of the disease in people. The launch was the combined effort of the Huntington’s Disease Association of Ireland (HDAI) and neuropsychologist Niall Pender, who together put resources in place to launch the study. “There’s a great […]
Q&A with Sarah Tabrizi – Director of the Huntington’s Disease Center at University College London
Sarah Tabrizi is involved in HD at almost every level. She’s professor of clinical neurology at the National Hospital for Neurology and Neurosurgery and director of the Huntington’s Disease Center at University College London and the National Hospital for Neurology and Neurosurgery, Queen Square, which serves more than 800 families. She leads a large and […]
Communities in South America unable to afford medications
In an article that appeared in the Guardian UK last week, Dara Mohammadi discussed how the expensive drugs required to treat Huntington’s disease are far beyond the reach of the poor communities in South America who take part in research studies. Although there are no treatments to change the disease’s course, says Bernhard Landwehrmeyer, a […]
Huntington’s Disease Public Awareness Day 2016
Huntington’s Disease Public Awareness Day Saturday, May 28TH As part of the Together Under the Umbrella awareness campaign for brain disorders, EFNA will organise an information day on Huntington’s Disease. The event is open to those living with Huntington’s disease, their families and friends, carers, health professionals or those with an interest in learning more. […]
#LightItUp4HD for the HD Community
On May 4, 2015, Jamie Walters – a volunteer from the Huntington Society of Canada (HSC) – was instrumental in lighting up the CN Tower to raise the visibility of Juvenile HD (in purple) and HD (in blue) and Huntington disease awareness month, held each May. When the sun set on May 4th, hundreds of […]