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Школа здоровья в Самаре

Центр помощи пациентам с орфанными заболеваниями

27 июля в Самаре состоится Школа здоровья для людей с болезнью Гентингтона и их родственников.Помимо новой информации о заболевании, вы сможете получить бесплатные индивидуальные консультации от лучших российских специалистов.В программе… More »

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Roda de Conversa ABH – Julho/24

ABH – Associação Brasil Huntington

A ABH convida você para a Roda de Conversa #HuntingtonEmPauta! Tema do encontro: A necessidade do equilíbrio entre a vontade do cuidador e a vontade do paciente ✋ Convite exclusivo para pacientes, familiares e cuidadores da comunidade de Doença de Huntington. 🗓️ Sábado, 20 de julho ⏰ 14:30 às 16:00 💻 Evento on-line via Google […]

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Blue skies for Skyhawk: Positive news from Phase 1 trial for SKY-0515

Enroll

The stormy trial updates that hung over the Huntington’s disease (HD) field in 2021 have certainly parted, making way for the bright and clear forecast we’ve had so far in 2024! Close on the heels of recent positive trial news from Sage Therapeutics, PTC Therapeutics, Wave Life Sciences, and uniQure, we’ve received more encouraging results […]

UniQure comparte resultados positivos del estudio de terapia genética con AMT-130. Descubre las últimas noticias.

El 9 de julio, la empresa UniQure, especializada en terapia genética, ha publicado resultados preliminares tras 24 meses de estudio con el compuesto AMT-130 en pacientes con enfermedad de Huntington. […]

La entrada UniQure comparte resultados positivos del estudio de terapia genética con AMT-130. Descubre las últimas noticias. se publicó primero en .

Blue skies for Skyhawk: Positive news from Phase 1 trial for SKY-0515

HDBuzz (English)

The stormy trial updates that hung over the Huntington’s disease (HD) field in 2021 have certainly parted, making way for the bright and clear forecast we’ve had so far in 2024! Close on the heels of recent positive trial news from Sage Therapeutics, PTC Therapeutics, Wave Life Sciences, and uniQure, we’ve received more encouraging results from another company, Skyhawk Therapeutics, about their drug SKY-0515. Since there are a lot of trials going on right now in the HD space testing various drugs, let’s break down how SKY-0515 works, what we’ve learned so far from this Phase 1 trial, and how it differs from other drugs being tested.

How does SKY-0515 work?

SKY-0515 is designed to lower huntingtin (HTT), the molecule that ultimately causes HD. While we all have the HTT gene, folks who go on to develop HD have an extra stretch of genetic message within their HTT gene. The good news is that since we know the exact genetic cause of the disease is within the HTT gene, it gives us a very reasonable target to go after. That’s why Skyhawk, along with many other companies, have focused on developing drugs that lower HTT.

HDSA Awards Six 2024 Donald A. King Summer Research Fellowships

News - Huntington's Disease Society of America

HDSA AWARDS SIX 2024 DONALD A. KING SUMMER RESEARCH FELLOWSHIPS    New York, NY (July 10, 2024) — The Huntington’s...

The post HDSA Awards Six 2024 Donald A. King Summer Research Fellowships first appeared on Huntington's Disease Society of America.

HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS TWO 2024 BERMAN-TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIPS 

News - Huntington's Disease Society of America

FOR IMMEDIATE RELEASE  Contact: Mynelly Perez, Director of Marketing & Communications  (212) 242-1968 ext. 214  MPerez@hdsa.org     HUNTINGTON’S DISEASE...

The post HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS TWO 2024 BERMAN-TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIPS  first appeared on Huntington's Disease Society of America.

Implementing physiotherapy guidelines in Huntington’s disease

HDA - UK

Update uniQure 9 juli 2024

Nieuws - Vereniging van Huntington

Update uniQure

 Uitgebreide weergave tussentijdse resultaten Fase I/II studies uniQure met AMT-130

Facebook DEF uniQure JUL24

uniQure heeft op 9 juli 2024 een persverklaring uitgegeven waarin ze tussentijdse resultaten presenteren van patiënten die deelnemen aan de lopende klinische fase I/II onderzoeken van AMT-130, [HD Gene TRX-1 en HD Gene TRX-2], voor de behandeling van de ziekte van Huntington in Amerika en Europa. De analyse omvat de follow-up periode van maximaal 24 maanden. uniQure maakte gebruik van een externe controlegroep.

De belangrijkste updates zijn:

AMT -130 - An update from UniQure

HDA - UK

uniQure Announces Positive Interim Data Update Demonstrating Slowing of Disease Progression in Phase I/II Trials of AMT-130 for Huntington’s Disease

News - Huntington's Disease Society of America

Your chance to tell us what you think about fundraising

HDA - UK

uniQure Announces Positive Interim Data Update Demonstrating Slowing of Disease Progression in Phase I/II Trials of AMT-130 for HD

Research – International Huntington Association

“We are very pleased with these new data demonstrating a statistically significant, dose-dependent slowing of the progression of Huntington’s disease and lowering of NfL in the CSF at 24 months,” […]

Webinar: Pharma Intelligence and Huntington’s Disease: Unveiling New Treatment Horizons

ABH – Associação Brasil Huntington

Dear HD Community, The Associação Brasil Huntington, in collaboration with BioDecision Analytics, invites you to a webinar on  🗓️ July 18th at 12pm BRT (UTC -3) to better understand the potential of pharma intelligence to transform Huntington’s disease treatment. In this webinar, Dr. Rodrigo P. Araldi will explore the concept of pharma intelligence and how […]

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Com apoio da ABH, empresa brasileira utiliza inteligência artificial para revolucionar a pesquisa e o futuro de novos tratamentos para a doença de Huntington

ABH – Associação Brasil Huntington

A doença de Huntington (DH) é uma doença neurodegenerativa genética que leva à progressiva morte dos neurônios, causando alterações motoras, cognitivas e psiquiátricas que, juntas, impactam significativamente a qualidade de vida da pessoa com DH e sua família. Embora a base genética da doença seja conhecida há mais de três décadas, a doença de Huntington […]

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Com apoio da ABH, brasileiros utilizam Inteligência Artificial para revolucionar a pesquisa e o futuro de novos tratamentos para a DH

ABH – Associação Brasil Huntington

A doença de Huntington (DH) é uma doença neurodegenerativa genética que leva à progressiva morte dos neurônios, causando alterações motoras, cognitivas e psiquiátricas que, juntas, impactam significativamente a qualidade de vida da pessoa com DH e sua família. Embora a base genética da doença seja conhecida há mais de três décadas, a doença de Huntington […]

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Dance 100 heads to Inverness for the first time in support of Huntington’s families

Aiva and family swing into action after unexpected diagnosis

The Scottish Huntington’s Association Dance 100 roadshow will roll into the heart of the city for the first time on […]

Lyssna på vårt projekt YTAN´s poddar

RHS Riksförbundet Huntingtons Sjukdom

Lyssna på unga anhöriga som berättar om sina känslor och tankar kring att vara anhörig. Du kan också lyssna till forskare, läkare, psykologer och andra professionella som pratar om olika ämnen. Har du förslag på ett ämne eller vill du själv delta i ett poddavsnitt, tveka inte att höra av dig till oss. Gå till…

Inlägget Lyssna på vårt projekt YTAN´s poddar publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Информационный ( поликлинический) день 14.07.2024 г.

Центр помощи пациентам с орфанными заболеваниями

 14 июля в 12.00 часов состоится Информационный (поликлинический) день для семей с болезнью Гентингтона .На инфо дне вы получите бесплатные консультации у лучших специалистов в области изучения и лечения болезни… More »

The post Информационный ( поликлинический) день 14.07.2024 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.

Информационный ( поликлинический) день 14 июля 2024 г.

Центр помощи пациентам с орфанными заболеваниями

 14 июля в 12.00 часов состоится Информационный (поликлинический) день для семей с болезнью Гентингтона .На инфо дне вы получите бесплатные консультации у лучших специалистов в области изучения и лечения болезни… More »

The post Информационный ( поликлинический) день 14 июля 2024 г. appeared first on Центр помощи пациентам с орфанными заболеваниями.