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 Association (IHA), which aims is to see that every HD family, in every corner of the world, has access to support in their own country and in their own language.  Mustafa Mehkary, who was the driving force behind the creat ..read more

SOM Biotech, a clinical-stage drug discovery and development company based on a unique proprietary Artificial Intelligence platform (SOMAIPRO®), is pleased to announce that the recruitment of the Phase IIb clinical study with SOM3355 as a treatment for Huntington’s chorea has been completed. After a a Phase IIa study where the patients confirmed the good safe profile and clinical benefit on choreic movements , SOM Biotech conducted a 12-weeks doubleblind, placebo-controlled dose-finding Phase IIb study, assessing the efficacy and safety of two dose regimens. Results are expected by the end of ..read more

Prilenia announced today that they plan to submit a Marketing Authorization Application in the EU for the use of Pridopidine in the treatment of Huntington’s Disease. According to Dr. Michael Hayden, CEO of Prilenia “Pridopidine demonstrates consistent treatment benefits across independent measures that are important to patients and families. These measures, which include day-to-day function, cognition, motor and clinical progression, are clearly evident in those who are not taking anti-dopaminergic medications (ADMs).” President of the International Huntington Association, Svein Olaf Olsen sa ..read more

It is official! The International Huntington Association is now a part of RDI, Rare Diseases International. This is a huge step for IHA, as it means we are not only playing an important role in the HD community, but also in the Rare Diseases community. “We are delighted to have been accepted as a full member of RDI.  This means a lot to us and to be able to tell the world that we have reached this position in the year we celebrate our 50th anniversary, is fantastic”, states Svein Olaf Olsen, the President of the International Huntington Association. The President adds: “This is hopefully ..read more

~ 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 at 18 months ~ ~ AMT-130 continues to be generally well-tolerated across both doses ~ ~ Data support continuing clinical development of AMT-130 and pursuing regulatory interactions to discuss potential strategies for ongoing developmen ..read more

Almost exactly 18 months after my diagnosis of suffering from Huntington’s Disease, I embarked on the journey to the European Huntington Conference in Belgium. The days in Blankenberge became an informative and occasionally overwhelming experience for me. Community, compassion, and empowerment – these terms roughly describe my memories of those days. I had been looking forward to the event, for which I had registered about six months earlier. Unfortunately, my health deteriorated so much in the run-up to the conference that I could barely walk. But I wanted to go! So, I borrowed an electric wh ..read more

After being approved by the Chamber of Deputies last year, the Bill 5060/13 was finally published in the Official Diary of the Union last month, 21st of June, establishing the 27th of September as the National Huntington’s Disease Awareness Day. The creation of this day was officialized by the President Luiz Inácio Lula da Silva, through the sanction of Law 14.607/23. The text was signed by the vice-president, Geraldo Alckmin. This day is a testimony of the power of union and collective effort. Thanks to the tireless dedication of patients, families and some healthcare professionals, we now h ..read more

MENA Organization for Rare Diseases announces the third annual meeting, MENA Organization for Rare Diseases Annual Meeting & Exhibition 2024 that will be held in Movenpick Grand Al Bustan Dubai from 1 to 4 February 2024. This conference will be the largest event for rare diseases in the region and will last for 4 days during which experts will deliver the most updated knowledge in presentations, workshops, and group meetings related to rare diseases in various medical fields including neurology, oncology, ophthalmology, dermatology, genetics, metabolic, surgery, cardiology, pulmonary, endo ..read more

~ AMT-130 continues to be generally well-tolerated across both dose cohorts ~ ~ Patients treated with AMT-130 show preserved function compared to baseline and clinical benefits relative to natural history of the disease ~ ~ Neurofilament Light Chain (NfL) in cerebrospinal fluid (CSF) was below baseline at 24 months in patients treated with the low-dose of AMT-130 and declining towards baseline at 12 months in patients treated with the high-dose of AMT-130 ~ ~ Suppression of CSF mHTT in low-dose cohort supports AMT-130 target engagement; Greater variability observed in high-dose cohort ~ ~ Prom ..read more

It’s May Awareness Month! Each year, the global Huntington’s community unites during the month of May in a shared mission to raise awareness for the thousands of people affected by Huntington’s Disease (HD). This year we want to raise the global community voice and give them a safe space to share their stories, talk about the importance of clinical research for Huntington’s disease and encourage them to join local association’s events. At this moment, we have 2 initiatives confirmed: Webinar PROOF-HD study - What do the results show us and what's next? Register here for the upcoming webi ..read more