HD Focus

New York, NY, September 21, 2022; The European Medicines Agency (EMA) has issued a qualification opinion that details facets of the Enroll-HD registry, core observational study, and clinical research platform that are especially suited to post-authorization regulatory approval. Scientific advice on Enroll-HD was sought in March 2021 under a recently launched EMA initiative to facilitate […]

New York, NY / London, UK, September 21 2022; IXICO, uniQure, PTC Therapeutics, Inc, and CHDI Foundation have formed the Huntington’s Disease Imaging Harmonization Consortium (HD-IH) to better understand the structural brain changes that occur over the course of HD. Accurate segmentation of magnetic resonance images (MRIs) is essential to measuring the brain’s anatomical structures, […]

The Postcards are a series of short videos aimed at non-scientists that convey the major themes, scientific breakthroughs, and clinical trial updates from each year’s Huntington’s Disease Therapeutics Conference held (most usually) in Palm Springs, California. Beginning in 2006, this series of conferences is a unique forum where researchers from academia meet with pharmaceutical and […]

Jedes Jahr wird auf der CHDI Therapeutics Conference ein Video produziert, das einen Überblick über die neuesten Forschungsergebnisse zur Behandlung der Huntington-Krankheit gibt. CHDI steht für Cure Huntington’s Disease Initiative. Die Videos sind auf Englisch.

日時：2022年7月3日（日）　13：30～17：00　オンライン形式ZOOM会議URLは会員メーリングリストでお知らせします。 プログラム １３：００＿＿＿＿＿＿＿開場 １３：３０～１３：４０　開会あいさつ １３：４０ […]

Presented in the 2nd Puerto Rico Public Health Summit (2022) Abstract Huntington’s Disease (HD) is an incurable, hereditary, neurodegenerative disorder characterized by involuntary movements, loss of cognitive function and personality changes. HD symptoms progressively worsen after the clinical diagnosis, resulting in death over 15-20 years. Worldwide HD affects an estimated 3-7 per 100,000 people ofContinue reading "First Estimate of the Prevalence of Huntington’s disease in Puerto Rico"

日時： 2022年5月14日 （土）14時から16時 プログラム　　〇14時～15時　講演会　「ハンチントン病患者の入院・転院調整とそのポイント～難病相談の事例から～」大阪難病医療情報センター　難病医療コーディネーター　 […]

このところのHD臨床試験にまつわるニュースを、これさえ読めばすべてわかるというこの記事でもって改めて総ざらいしてみましょう。この記事ではHD治療薬開発についての最近の動向を網羅しています。　　（原文はこちら） 執筆：レイ […]

Lots of news including Report from the CEO, information about the HDANI support group, new staff, awareness campaign, clinical trial round up and fundraising activities.

Click here for registration HDSI_Virtual-Conference_2021

Support groups can offer vital emotional support, valuable advice about community-based resources as well as guidance from other group members about many of HD’s most challenging situations. HDSG is can be established for everyone in the HD community —caregivers, those living with HD, those living at risk, youth at risk, etc.Roles & Boundaries of HDSG:•

The second HDSI Workshop was conducted on 7th March 2020 at DRDO’s Officer’s Mess premises, Bangalore. The workshop included knowledge sharing and open discussion with the patients and families on different subjects. Dr. Sanjeev Jain shared several experiences that he has encountered while treating HD patients. He focused on the need for Genetic Counselling before

Introduction Today HD affected families in India face a plethora of challenges in dealing with the disease with meagre institutional support. Clinicians and health care professionals face their own challenges in treating, in keeping abreast with the rapidly evolving guidelines. This HD conference is the first in India to discuss the important aspects of HD

Nyheder fra det globale Enroll-HS-fællesskab. Se CHDI-ENROLL-HD-NL-SUMMER-2019-DK-2020-01-14 for hele artiklen.

Original en inglés por: Dra. Bonnie Hennig-Trestman Saludos a todos,  Para este artículo pensé que sería útil componer una lección sobre Huntington 101. Para muchos de ustedes esto puede ser un repaso. Para otros, este artículo puede corregir información incorrecta que hayan recibido. Confío en que todos puedan aprender algo nuevo. ¿Qué es la enfermedad deContinue reading "HUNTINGTON 1O1"

La Organización Juvenil de la Enfermedad de Huntington (Huntington’s Disease Youth Organisation) es una organización internacional de voluntarios sin ánimo de lucro creada específicamente para dar apoyo a jóvenes de todo el mundo afectados por la Enfermedad de Huntington. La Dra. Bonnie, quien ha estado colaborando con nosotros, pertenece a la Junta de Directores y nosContinue reading "CONVOCATORIA DE BECA PARA JÓVENES DE 18 A 35 AÑOS"