Türkiye Huntington Derneği

30/04/2026

Novartis shares encouraging news on votoplam clinical trial for HD!

The results reinforce confidence in the ongoing Phase 3 trial - an important milestone in clinical development. While we should be cautious in jumping to conclusions, this update is indeed an encouraging sign of continued progress.
We look forward to further data expected later this year.

Read the full article to learn more ➡️ https://eurohuntington.org/2026/04/29/novartis-community-update/

Read the Community letter here ➡️https://eurohuntington.org/wp-content/uploads/2026/04/Novartis-Community-Letter-on-Votoplam-Ph2-24-mths-results.pdf

30/04/2026

Encouraging news for the HD community! uniQure has announced that UK regulators are positive to review data from the AMT-130 therapy for potential market access. This follows the promising study results presented last September.

“This is very exciting”, says EHA President Astri Arnesen, “For the HD community this is a good day!” While we remain cautious as the evaluation continues, this is an important and hopeful step forward.

Read the full article to learn more ➡️ https://eurohuntington.org/2026/04/30/uk-regulators-positive-to-evaluate-huntington-treatment/

Read the press release ➡️ https://uniqure.gcs-web.com/node/12636/pdf

07/11/2025

UniQure amt-130 ile ilgili yeni basın açıklaması.

uniQure published a press release today communicating a shift in FDA requirements to evaluate AMT-130 for approval. 🧬🇺🇸

We understand that this news brings uncertainty in timelines, but we also want to emphasize that the science and results remain unchanged, and efforts to advance AMT-130 continue.

Read the full article to learn more: https://eurohuntington.org/2025/11/03/uniqure-provides-regulatory-update-on-amt-130/

17/10/2025

Değerli Üyelerimiz,

Ben, Türkiye Huntington Derneği Yönetim Kurulu’ndan Dr. Neslihan Ergün Süzer.
26–28 Eylül tarihleri arasında dernek başkanımız Sayın Naim Bey ile birlikte Bükreş’te düzenlenen Avrupa Huntington Derneği (EHA) Konferansına katılım sağladık.
Bu yılki konferansta özellikle ilaç araştırmalarında kaydedilen ilerlemeler dikkat çekiciydi. Hatta bu çalışmalardan birine gönüllü olarak katılan bir bireyle tanışma fırsatımız da oldu. Henüz 3. faz aşamasına geçmemiş olan bu ilaç çalışması, gerekli onayların alınmasının ardından daha geniş katılımlı biçimde sürdürülecek.
Ayrıca genetik alanındaki araştırmaların da hızla ilerlediğini görmek bizler için umut vericiydi. Elbette bu gelişmeler kısa vadede sonuçlanabilecek türden değil; ancak her geçen gün Huntington hastalığıyla ilgili daha umut verici adımların atıldığını bizzat gözlemledik.
Tüm bu süreçleri yakından takip ediyor, sizleri düzenli olarak bilgilendirmeye devam edeceğimizi belirtmek isteriz.

Saygılarımla,
Dr. Neslihan Ergün Süzer
Türkiye Huntington Derneği Yönetim Kurulu Üyesi

08/10/2025

5 kutu Tedmodis ilaç !!

Bursa da yaşayan Emine hanım Huntington hastalığından dolayı vefat eden Teyzesinden kalan 5 kutu Tedmodis ilacı ihtiyacı olan ailelere ücretsiz olarak ölen teyzesinin hayrına dağıtacaktır. Vefat eden merhumeye Allahtan rahmet ailesine sabırlar diliyor ve Emine hanıma duyarlı davranışından dolayı teşekkür ediyoruz.

İrtibat numarası; +90 539 665 55 11
Emine Güleç

30/09/2025

Konferansa katılımımızı gerçekleştirdik,önümüzdeki günlerde Dr. Neslihan hanım edindiğimiz birikimleri ve ilaç firmalarının klinik çalışmalarını sayfamızdan paylaşacaktır

24/09/2025

Bir umut verici gelişmede UniQure’den !

📣 Positive news for the HD Community!

🔬 uniQure announced today the results for the Phase I/II Study of AMT-130 for the treatment of patients with HD. The study met its prespecified primary endpoint, with high-dose AMT-130 demonstrating a statistically significant slowing of disease progression as measured by the composite Unified Huntington’s Disease Rating Scale (cUHDRS) at 36 months compared to a propensity score-matched external control.

🔗 Read the full press release here http://bit.ly/3W2KJkq

19/09/2025

Umut verici gelişme ! Bu ay sonunda Romanya nın başkenti Bükreş te yapılacak EHA 2025 konferasına katılarak konu hakkındaki gelişmeleri yüz yüze görüşüp daha deyaylı bilgi alacağız

Promising Results for New HD Drug SKY-0515

Skyhawk Therapeutics has shared encouraging early trial results for SKY-0515, an experimental pill being studied for Huntington’s disease. The drug reached the brain well, was safe so far, and is now moving into a larger Phase 2/3 trial with 120 participants in Australia and New Zealand.

👉 Learn more and read the full press release: https://eurohuntington.org/2025/09/18/encouraging-phase-1-results-for-skyhawks-huntingtons-disease-investigational-treatment/

20/08/2025

Yaklaşan 2025 Eylül ayı sonundaki Bükreş EHA konferansına katılmak isteyen HD ailelerinin dikkatine,

Dear EHA member association,

With just over a month to go until the EHA Conference 2025 in Bucharest, we want to make sure that no one misses out on this important event.

To help all our member associations and their families attend, the EHA is offering scholarships. The scholarships are worth €200 and are intended to help cover registration fees.

If you are interested in applying for a scholarship or would like more information, please contact me as soon as possible.

We would appreciate your help in promoting the EHA 2025 Conference on your own social media channels. You can also send a reminder to your members about the event and encourage them to attend if they wish.

Your help in sharing this important information will make a big difference!

We look forward to seeing you all there from 25 to 28 September! ☺️

Please note that the registration deadline is 15 September.

You can view the full conference programme here: eurohuntington.org/2025/01/27/eha-conference-2025-romania/

Kind regards,

--
Ruth Blanco
Chief Operating Officer

29/07/2025

Today, Prilenia and Ferrer shared disappointing news: the EMA’s advisory body has given a negative opinion on the approval of pridopidine for HD.

However, this is not the end of the road. They are exploring all regulatory options, including the possibility to request a re-examination in the next two weeks.

Looking ahead, Prilenia has announced plans to launch a new global Phase 3 study, building on all the knowledge and insights gathered so far.

We understand this is disappointing news for our community. We will continue to follow developments closely and keep you updated.