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Update from the Middle East and North Africa

IHA President Svein Olaf Olsen was keynote speaker on Huntington’s Disease at the MENA Congress for Rare Diseases in Abu Dhabi last month. He spoke of the urgent need to establish a neurodegenerative centre of excellence in the region and promote clinical research. This aligns perfectly with the region’s intention

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FDA grants uniQure Regenerative Medicine Advance Therapy (RMAT) Designation

Today we are very happy in the Huntington community.  The announcement from Uniqure that the company has received the Regenerative Medicine Advanced Therapy (RMAT) “Designation for Investigational Gene Therapy AMT-130 in Huntington’s Disease is more than promising”, says President of IHA, Svein Olaf Olsen.  The RMAT ‘licence’ is based on

Read More »

Free Online Psychotherapy Programme for People with HD

Doctors at the University of Reading (UK) have developed a free online psychotherapy programme for people with Huntington’s Disease.  It’s part of a research project that looks at how people with HD (symptomatic or pre-symptomatic) manage their daily lives.  More details here. If you know of anyone who would like

Read More »

A new association for Huntington’s Disease is funded in Pakistan – HDSOP

Founding of the Huntington’s Disease Society of Pakistan April 24th 2024 Last week another national association was created.  The Huntington’s Disease Society of Pakistan (HDSOP) joined the growing  list of organisations dedicated to improving the lives of those affected by Huntington’s Disease.  The venture was supported by the International Huntington

Read More »

Breakthrough represents a new hope for HD patients

Scientists from the Weizmann Institute in Israel have published the results of an animal study which holds tremendous promise for the treatment of Huntington’s Disease.  They have discovered that two small molecules, called SPI-24 and SPI-77, can effectively reduce mutant huntingtin expression in the brain while leaving the normal gene

Read More »

uniQure Announces Update on Phase I/II Clinical Trials of AMT-130 Gene Therapy for the Treatment of Huntington’s Disease

~ Patients treated with AMT-130 continue to show evidence of preserved neurological function with potential dose-dependent clinical benefits relative to an inclusion criteria-matched natural history of the disease ~ ~ Mean CSF NfL continue to demonstrate favorable trends with low-dose patients below baseline at 30 months and high-dose patients near baseline

Read More »

Update from the Middle East and North Africa

IHA President Svein Olaf Olsen was keynote speaker on Huntington’s Disease at the MENA Congress for Rare Diseases in Abu Dhabi last month. He spoke of the urgent need to establish a neurodegenerative centre of excellence in the region and promote clinical research. This aligns perfectly with the region’s intention

Read More »

FDA grants uniQure Regenerative Medicine Advance Therapy (RMAT) Designation

Today we are very happy in the Huntington community.  The announcement from Uniqure that the company has received the Regenerative Medicine Advanced Therapy (RMAT) “Designation for Investigational Gene Therapy AMT-130 in Huntington’s Disease is more than promising”, says President of IHA, Svein Olaf Olsen.  The RMAT ‘licence’ is based on

Read More »

Free Online Psychotherapy Programme for People with HD

Doctors at the University of Reading (UK) have developed a free online psychotherapy programme for people with Huntington’s Disease.  It’s part of a research project that looks at how people with HD (symptomatic or pre-symptomatic) manage their daily lives.  More details here. If you know of anyone who would like

Read More »

A new association for Huntington’s Disease is funded in Pakistan – HDSOP

Founding of the Huntington’s Disease Society of Pakistan April 24th 2024 Last week another national association was created.  The Huntington’s Disease Society of Pakistan (HDSOP) joined the growing  list of organisations dedicated to improving the lives of those affected by Huntington’s Disease.  The venture was supported by the International Huntington

Read More »

Breakthrough represents a new hope for HD patients

Scientists from the Weizmann Institute in Israel have published the results of an animal study which holds tremendous promise for the treatment of Huntington’s Disease.  They have discovered that two small molecules, called SPI-24 and SPI-77, can effectively reduce mutant huntingtin expression in the brain while leaving the normal gene

Read More »

uniQure Announces Update on Phase I/II Clinical Trials of AMT-130 Gene Therapy for the Treatment of Huntington’s Disease

~ Patients treated with AMT-130 continue to show evidence of preserved neurological function with potential dose-dependent clinical benefits relative to an inclusion criteria-matched natural history of the disease ~ ~ Mean CSF NfL continue to demonstrate favorable trends with low-dose patients below baseline at 30 months and high-dose patients near baseline

Read More »
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