Category: Research

Meeting on how to improve care in Europe

In January, patient advocates visited the European Reference Network for Rare Neurological Diseases. During the meeting, they discussed how to provide better care and improve knowledge of rare diseases. From www.ern-rnd.eu | Meeting video below The aims of European Reference Network for Rare Neurological Diseases (ERN- RND) are to address the unmet needs of more…
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“RARE/D”: A NEW RARE DISEASE PODCAST

RARE/D is a new podcast series that started on December 29. On the podcast, topics such as genome editing and health care are being discussed by a multidisciplinary team. The series are now available across many platforms including iTunes and Spotify. Find the episodes here. Behind the podcast series is the the Whitworth group consisting…
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Left to right: Anne Lennon Bird, Svein Olaf Olsen and Astri Arnesen.

Unpacking Wave’s PRECISION-HD2 huntingtin-lowering trial announcement

Just before the new year, Wave announced that the drug in the PRECISION-HD2 trial had successfully lowered the concentration of mutant huntingtin in the spinal fluid. By Dr Jeff Carroll | Edited by Dr Ed WildPublished January 03, 2020 at www.HDBuzz.net DNA-based drugs called antisense oligonucleotides, or ASOs, are now in multiple clinical trials in Huntington’s disease, aiming to lower production…
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Trial Finder Launched in Europe

This Christmas, we launched the first HD Trial Finder in Europe. HD Trial Finder is a platform developed to make it easier for you to find out more about ongoing Huntington’s disease (HD) trials and studies in Europe. Right now, Huntington’s disease trials and studies are taking place all across Europe: GENERATION HD1, ENROLL-HD, PRECISION-HD1,…
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First human gene therapy trial in Huntington’s disease

UniQure announces key details of its planned trial to assess the safety and ability of AMT-130 gene therapy to lower the problematic huntingtin protein using a ‘single-shot’ virus delivery system. Article byDr Anna Pfalzer published at HDBuzz.net The European Huntington Association met uniQure in September to talk about the gene therapy trial. Go to video interview…
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EHA19: An Amazing Conference

October 4-6, the European Huntington Association conference was held in Bucharest. 220 professionals and family members were gathered in Romania to meet others and to learn more about Huntington’s disease.  Over the weekend, more than 30 sessions and workshops took place at the Ramada Bucharest Convention Center. In addition, there were important meetings taking place…
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Update on GENERATION HD1 study

The enrolment in the Phase III GENERATION HD1 study has been increased from 660 to 801 participants worldwide.This change does not impact participants already enrolled in the study, but it allows for additional patients to enrol in the three existing study groups. By enrolling more participants, Roche and Genentech will receive more data and increase…
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New huntingtin lowering treatment?

There are currently many pharmaceutical companies working on huntingtin lowering drugs. A new study from Sangamo Therapeutics and CHDI foundation might show a promising new huntingtin lowering tool.  There is a lot of Huntington’s disease research going on at the moment. Among other things, PTC Therapeutics is working on a pill – a small molecule…
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New project: e-health for Huntington’s patients and families

In order to ensure good care for Huntington patients and their families, the HEALTHE-RND project aims at developing an e-health platform. The platform will ensure access to help and information – regardless of where people live. Written by Alzbeta Mühlbäck, MD What’s it all about?  Huntington’s disease (HD) require intensive cooperation between different medical disciplines and…
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Latest Huntington News!

The EHDN Newsletter is here! Get updated on ongoing trials and Enroll-HD, read about Rob’s first meeting with the Huntington community and the situation for Huntington families in Venezuela. CONTENT Page 2 The Huntington’s disease minipig, Adela, is 10 Page 3 Giving families a place, a face and a voice Page 4 Update: Clinical trials…
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