カテゴリー: ニュース

地域社会に力を与えるブラジル・ハンチントン協会（ABH）による最近のイニシアティブの総括

The Brazilian Huntington Association (ABH – Associação Brasil Huntington) is incredibly active and has been conducting numerous initiatives for the community. This level of commitment is vital because it not […]

HDアドボケイト、アシュリー・クラークがuniQure本社での経験を語る

As well as being an ambassador for the Huntington’s Disease Youth Organisation (HDYO) Ashley Clarke is an advocate for the HD-Community Advisory Board (HD-CAB), a group that represents the patient […]

ライズ・アゲインスト・ハンチントン：2人の若い高校生がハンチントン病のために$2000を集めた方法

Jasmine and Sai are high school students from the US.  They’re two young people who are determined to make a difference and inspire others to follow suit.  A fundraising initiative […]

ブラジルで「全国ハンチントン病デー」が正式に制定される

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 […]

ディミトリ・ポッフェ（ハンティントンへの探検）の冒険が新しいドキュメンタリーで紹介される

The HD Community already knows Dimitri Poffé’s adventures too well, and now, the world will too. The French traveler who is doing a bicycle trip through all South America to […]

2024年MENA希少疾病年次総会・展示会

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 […]

PTCセラピューティクス社、ハンチントン病患者を対象としたPIVOT-HD臨床試験の良好な中間データを発表

June 21, 2023 PDF Version – Dose-dependent lowering of blood Huntingtin (HTT) protein levels at 12 weeks –– Favorable tolerability profile with no treatment-related serious adverse events or NfL spikes –  – Conference […]

ユニキュア社、ハンチントン病治療薬AMT-130遺伝子治療の米国第I/II相臨床試験の最新情報を発表

~ 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 […]

ポルトガルにおける「全国ハンチントン病デー」について

Today, 15th June, is National Huntington’s Disease Day in Portugal. To honour this special date, we have a message from the Portuguese association, Associação Portuguesa de Doentes de Huntington (APDH) […]

5月啓発月間です！

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 […]