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hdom.org http://hdom.org Oman's Huntington Disease Association Thu, 17 Nov 2016 17:53:18 +0000 en-US hourly 1 https://wordpress.org/?v=4.4.11 The Oman HD Association at the Italian HD Research Conference on December 3, 2016 http://hdom.org/2016/11/17/the-oman-hd-association-at-the-italian-hd-research-conference-on-december-3-2016/ http://hdom.org/2016/11/17/the-oman-hd-association-at-the-italian-hd-research-conference-on-december-3-2016/#respond Thu, 17 Nov 2016 17:50:02 +0000 http://hdom.org/?p=403 ‘HD Research borders: from initial findings to experimental results’.
This is the title of the Conference which will be held in Rome on the next December 3, 2016.
It is the annual conference promoted by our partner organization LIRH (Italian League for Research on Huntington and related diseases), with the aim of updating the Italian HD community on what is going on in the research world, with a particular focus on experimental drug trials.

A complete overview of all the HD clinical trials will be given; the preliminary results on the ‘pridopidine’ compound will be illustrated; an update on the gene therapy trial will be presented.

Mr Mohammed Al-Hajri – President of the Oman HD Association- has been invited as a speaker to share the Oman Huntington Association experience with the Italian families. This is a great opportunity to get updated information on research to be shared with the Omani families, once Mr Al-Hajri will be back in Muscat.

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Teva Announces Results from Exploratory 52-Week Phase 2 PRIDE-HD Study of Pridopidine in Huntington Disease http://hdom.org/2016/10/05/teva-announces-results-from-exploratory-52-week-phase-2-pride-hd-study-of-pridopidine-in-huntington-disease/ Wed, 05 Oct 2016 06:26:15 +0000 http://hdom.org/?p=379 ‘The Pride-HD Phase 2 preliminary results are encouraging as they show – for the firts time – benefits on the disease progression, although the study did not meet its primary endpoint.’ said Prof. Ferdinando Squitieri – LIRH Foundation Scientific Director and Head of The Huntington Disease Research Unit at Casa Sollievo della Sofferenza Research Hospital, Italy – in the meeting with the HD families of the Oman HD Association held on the last October 3, 2016.

Read more on:
http://www.lirh.it/it/tutte-le-novit%C3%A0-dallehdn-meeting-2016-con-un-approfondimento-su-pridopidina

Official press release of Teva on:
http://www.tevapharm.com/news/teva_announces_results_from_exploratory_52_week_phase_2_pride_hd_study_of_pridopidine_in_huntington_disease_09_16.aspx

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Huntington’s Disease has many faces – video (English subtitles) http://hdom.org/2016/09/24/huntingtons-disease-has-may-faces-video/ http://hdom.org/2016/09/24/huntingtons-disease-has-may-faces-video/#respond Sat, 24 Sep 2016 14:04:24 +0000 http://hdom.org/?p=367 More awareness on HD.

This is a video by Italian League for Research on Huntington and related diseases (LIRH):

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HD Therapeutics Conference – Palm Springs (USA), 22-25 Feb 2016 : Video (Arabic Subtitles) http://hdom.org/2016/09/24/hd-therapeutics-conference-held-in-palm-springs-usa-22-25-feb-2016-the-video-is-now-available-with-arabic-subtitles/ http://hdom.org/2016/09/24/hd-therapeutics-conference-held-in-palm-springs-usa-22-25-feb-2016-the-video-is-now-available-with-arabic-subtitles/#respond Sat, 24 Sep 2016 13:33:55 +0000 http://hdom.org/?p=363 One of the most important international symposium on Huntington’s Disease on new therapeutic approaches is the Annual HD Therapeutic conference promoted by CHDI Foundation.

‘Postacards from Palm Springs’
A very interesting report on the 2016 conference is available also in Arabic at this link:

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EHDN 2016 Plenary Meeting http://hdom.org/2016/08/16/ehdn-2016-plenary-meeting/ http://hdom.org/2016/08/16/ehdn-2016-plenary-meeting/#respond Tue, 16 Aug 2016 08:08:34 +0000 http://hdom.org/?p=345 The EHDN (European Huntington Disease Network) 2016 Plenary Meeting will take place at the World Forum in The Hague, The Netherlands, 16-18 September 2016.
Researchers will present recent research results and family associations from all over Europe and abroad will exchange their experiences and future plans.
EDDN 2016 immagine
The Oman Huntington Disease Association will join EHDN 2016.

More on http://www.euro-hd.net/html/ehdn2016/announcement and on http://eurohuntington.org

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Teva Announces FDA Acceptance of New Drug Application for SD-809 for Treatment in Huntington Disease http://hdom.org/2015/08/20/teva-announces-fda-acceptance-of-nda-for-sd-809-for-treatment-in-huntington-disease/ http://hdom.org/2015/08/20/teva-announces-fda-acceptance-of-nda-for-sd-809-for-treatment-in-huntington-disease/#respond Thu, 20 Aug 2015 05:42:31 +0000 http://hdom.org/?p=268 Teva Pharmaceutical Industries Ltd announced on August 12, 2015 that the New Drug Application (NDA) for SD-809 (deutetrabenazine) has been accepted by the U.S. Food and Drug Administration (FDA) for the treatment of chorea associated with Huntington disease (HD), a rare and fatal neurodegenerative disorder caused by the progressive breakdown of nerve cells in the brain that affects about five to seven people per 100,000 in western countries, according to the World Health Organization.

SD-809 (deutetrabenazine) is an investigational, oral, small molecule inhibitor of vesicular monoamine 2 transporter, or VMAT2, that is designed to regulate the levels of a specific neurotransmitter, dopamine, in the brain. SD-809 is being developed for the treatment of ‘chorea’ associated with Huntington disease, a neurodegenerative movement disorder that impacts cognition, behavior, and movements. The FIRST-HD study showed a favorable safety and tolerability profile, including low rates of depression, somnolence, akathisia/restlessness and anxiety. The safety and tolerability experience observed in the ARC-HD study was consistent with the experience observed in the FIRST-HD study. The most commonly reported adverse events in ARC-HD patients were somnolence, fall, and nasopharyngitis.

Read more on http://www.tevapharm.com/news/?itemid=%7BB77B4464-664B-4DC5-8373-F7D040CE2327%7D

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‘The Inheritance’ Huntington’s Documentary – An Intimate Story of a Courageous Family http://hdom.org/2015/08/18/the-inheritance-huntingtons-documentary-an-intimate-story-of-a-courageous-family/ http://hdom.org/2015/08/18/the-inheritance-huntingtons-documentary-an-intimate-story-of-a-courageous-family/#respond Tue, 18 Aug 2015 06:21:40 +0000 http://hdom.org/?p=259 The Inheritance DVD Cover
The inheritance addressed in this illuminating, personal and courageous film could hardly be more daunting. Film editor Bridget Lyon was just 21 when she found out her mother had the gene for Huntington’s Disease, a hereditary degenerative brain condition. At 33, Bridget and her two older brothers – who each had a 50% chance of inheriting the disease – finally chose to get tested.
Australian-New Zealand filmmakers Bridget and her partner in life and work, Jeff McDonald, have documented a confronting time in their lives as they find out that their family will not go untouched by this horrific disease.
“Discovering that I have not escaped the family inheritance, I set out on a journey to honour my mother and find hope for my child,” says Bridget. “I uncover the horrors of dying from Huntington’s Disease and discover stories of those who have killed themselves as first symptoms appear, not wanting to deteriorate as they have seen parents or siblings do.”
“I discover a profound tale of unconditional love as I visit my Mum who fights silently every day with my Dad by her side. I struggle to face up to the reality of such an inevitable demise for so many of my family and the harrowing possibility that my son might have inherited it. But as my family strains under this impossible pressure we find that we are even stronger than we thought.”
‘The Inheritance’ film tells of the history, science and impact of Huntington’s and shows the everyday heroism of people facing up to this disease, including Charles Sabine, former NBC News journalist, now an international spokesperson for people living with HD. Meet historians, personalities from the Huntington’s Disease global community and foremost scientists and medical experts racing to find a cure. With what they know now, will life be different for Bridget and other sufferers of Huntington’s Disease in their lifetime?
‘The Inheritance’ screened to sell-out World Premiere screenings at the 2014 New Zealand International Film Festival and also screened at the 2014 Tasmanian Breath of Fresh Air Film Festival.
“A tremendously affecting film.” Radio New Zealand
“Truly one of the most moving and inspirational stories I have ever witnessed on the big screen.” The Dominion Post

“It is absolutely an incredible documentary – the type of which, once you see it, you never forget it.” ABC Radio National
‘The Inheritance’ is now available on DVD and Video on Demand at: www.theinheritancedocumentary.com
Judy and Bridget Lyon The Inheritance cropped web
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August 17 – 21, 2015: Professor Ferdinando Squitieri from Italy is visiting Huntington Disease patients as MOH consultant at Royal Hospital in Muscat http://hdom.org/2015/08/18/august-17-21-2015-prof-squitieri-from-italy-is-visiting-huntington-disease-hd-patients-at-the-neurogenetics-clinic/ http://hdom.org/2015/08/18/august-17-21-2015-prof-squitieri-from-italy-is-visiting-huntington-disease-hd-patients-at-the-neurogenetics-clinic/#respond Tue, 18 Aug 2015 06:14:33 +0000 http://hdom.org/?p=256 The Neurogenetics Clinic at the National Genetic Centre of Royal Hospital is open to HD patients and familise from August 17th: prof Squitieri will be visiting patients till August 21.

This is the second time in 2015, as the Neurogenetics Clinic has been opened for HD patients also in February.

The Neurogentics Clinic for HD is supported by the Omani  Ministry of Health (MOH), the National Genetic Centre (dr. Anna Rajab) and the Neurology Unit (dr. Jaber Al Khaboori), at the Royal Hospital In Muscat.

Ferdinando Squitieri hai been studying and treating HD over the last 30 years. He is  Head of the Research and Cure for Huntington and Rare Diseases Unit at IRCCS Fondazione Casa Sollievo della Sofferenza, Opera di San Pio da Pietrelcina in San Giovanni Rotondo (FG) (Research Institute focused on herereditary diseases:http://www.operapadrepio.it/ ) and at Istituto CSS Mendel (Genetic Institute:http://www.css-mendel.it/ ) in Rome. He is also scientific director of LIRH Foundation, the Italian not for profit League for Research on Huntington and related diseases (www.lirh.it), which is partner of the Oman HD Association.

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European Huntington Association Conference: Warsaw 18-20 September, 2015 http://hdom.org/2015/08/18/european-huntington-association-conference-warsaw-18-20-september-2015/ http://hdom.org/2015/08/18/european-huntington-association-conference-warsaw-18-20-september-2015/#respond Tue, 18 Aug 2015 05:59:19 +0000 http://hdom.org/?p=253 The European Huntington Association (EHA) board is pleased to announce the next EHA conference and EHA meeting which will  take place from September 18th to 20th 2015 in Warsaw, Poland.
This conference will focus especially on the needs of everyday life and how to cope living with HD. Relevant research will be presented in an easy accessible way.
The conference is open to everybody. HD association members, patients, family members, health workers and carers are specially welcome.
The Oman HD Association is member of the European Huntingotn Association and of the International Huntington Association.
More info on the EHA conference on www.eha2015.com
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August 17 – 21, 2014: Prof Squitieri from Italy is visiting Huntington Disease (HD) patients at the Neurogenetics Clinic http://hdom.org/2014/08/18/august-17-21-2014-prof-squitieri-is-visiting-patients-at-the-neurogenetics-clinic/ http://hdom.org/2014/08/18/august-17-21-2014-prof-squitieri-is-visiting-patients-at-the-neurogenetics-clinic/#respond Mon, 18 Aug 2014 14:59:14 +0000 http://hdom.org/?p=228 From August 17 to 21, 2014 Prof Ferdinando Squitieri from Italy is in Muscat to visit HD patients, to meet their families and to train National Genetic Centre lab personnel on how to perform  the genetic test, with part of his staff, including  geneticist dr. Alba Di Pardo.

Prof Squitieri  visits HD patients at the National Genetic Center, Royal Hospital in Muscat, in the morning from h 9.00 to h 13.00.

 

NGC

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