Daniela Carvalho

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 voice in the design and conduct of clinical trials.   Following an HD-CAB advisory board meeting with uniQure in 2022 Ashley Read more…

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 they set up and managed recently raised an incredible $2000 for Huntington’s Disease.  While initially planning to put value into 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 Read more…

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 raise awareness for Huntington’s Disease will now have his own documentary to report his jorney. An epic 18.000-kilometer (11.200 mi) 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 Read more…

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 call and webcast to be held June 21st at 8:00 am EDT –  SOUTH PLAINFIELD, N.J., June 21, 2023 /PRNewswire/ — PTC Therapeutics, Inc. (NASDAQ: PTCT) today shared 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 Read more…

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) Today that marks National Day of Huntington’s Disease, we want to say some words that we wish you pass on 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 Read more…

Today, April 25th, Prilenia announced results from the PROOF-HD clinical trial for Huntington’s Disease. Some of the participants showed significant benefits from the Pridopidine drug, while others did not benefit at all.  This is promising because for the first time we have a drug that demonstrates effect on disease progression, cognitive and motor Read more…