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SocialHDLancos @socialhdlancos.bsky.social · 02/10/2026

**EHDN-Endorsed Study: AMT-130 (uniQure) – Additional Data**

SocialHDLancos @socialhdlancos.bsky.social · 02/10/2026

The East Midlands HD Network (UK) recently held a regional #HuntingtonsDisease (HD) event at the Leicester Tigers Stadium, the home of the Leicester Tigers Rugby Club.

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SocialHDLancos @socialhdlancos.bsky.social · 11/09/2026

Tominersen: GENERATION HD2 Results and Key Learnings, will take place on Tuesday, 29 September 2026, 16:00–17:30 CEST via Zoom. Find out more and register at: ehdn.org/ehdn-platfor... #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 10/09/2026

Last week in Colombia, Asun Martinez, from the EHDN/MDS-ES Fellowship Programme and former Lanco met with Elisabeth Castro from Venezuela, who completed an internship in Barcelona this year. Learn more about this program at: ehdn.org/pt/hd-clinic... #EnrollHD #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 08/09/2026

Our Spanish Lanco, Marta, frequently contributes to the Enroll-HD monitoring efforts in Latin America. Last week, she also participated in the 2026 Latin America Huntington’s Disease Conference in Medellín, Colombia. #EnrollHD #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 01/09/2026

🗳️ EHDN Elections 2026 Regular EHDN members can vote for the Executive Committee and Scientific & Bioethics Advisory Committee until 19 October 2026. 👉 VOTE NOW! Your vote helps shape the future of EHDN. Results will be announced at the EHDN Clinical Research Congress in Kraków.

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SocialHDLancos @socialhdlancos.bsky.social · 26/08/2026

Upcoming EHDN Platform Meeting: Peter McColgan (Roche) will present GENERATION HD2 results & key learnings - the Phase 2 tominersen trial in #HuntingtonDisease. 📅 29 Sept, 16:00–17:30 CEST 📍 Zoom Further information & registration link to follow - stay tuned

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SocialHDLancos @socialhdlancos.bsky.social · 18/08/2026

📢 EHDN/MDS (ES) Fellowship 2027 Applications open 1 Sept! Supports early-career HD clinicians/researchers with a 6-week placement at a leading multidisciplinary HD clinic in Europe. Further information: ehdn.org/hd-clinician... Questions? ✉️ fellowship@ehdn.org #HuntingtonsDisease #Training

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SocialHDLancos @socialhdlancos.bsky.social · 18/08/2026

🚨 FUNDING ALERT! 🚨 Applications are open for the Gossweiler Foundation Neurology Research Grant - funding non-pharmacological research into Parkinson's & movement disorder symptoms, based in/related to Switzerland. Deadline: 30 Sept 📅 🔗 www.jggf.ch/en/neurology... #ClinicalResearch #Funding

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SocialHDLancos @socialhdlancos.bsky.social · 14/08/2026

Some August viewing 🎬 The latest Postcard from Palm Springs is online - a quick, non-scientist-friendly roundup of highlights from the 21st Annual CHDI HD Therapeutics Conference (Feb 2026). 🔗 chdifoundation.org/postcard-fro... #HuntingtonsDisease #HDResearch

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SocialHDLancos @socialhdlancos.bsky.social · 11/08/2026

Registration for the EHDN Clinical Research Congress 2026 closes 14 August – we would love to see you there! Register here: na.eventscloud.com/ereg/index.p... #HuntingtonsDisease #HDCommunity #Advocacy #ClinicalResearch

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SocialHDLancos @socialhdlancos.bsky.social · 06/08/2026

EHDN Clinical Research Congress registration extended to 14 Aug! 22–24 Oct 2026, Kraków 🧬 Treatment pipeline: biomarkers to access 📋 Trial updates & regulatory perspectives 🔬 Latest scientific advances 🗣️ Community perspectives Register: na.eventscloud.com/ereg/index.p... #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 04/08/2026

🧬 WHAT IS EHDN ENDORSEMENT? More than a stamp of approval – it's a recognised quality marker for HD clinical studies, strengthening research through expert review before it reaches participants. 📰 Read more: ehdn.org/wp-content/u... #HuntingtonsDisease #ClinicalResearch

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SocialHDLancos @socialhdlancos.bsky.social · 31/07/2026

🗳️ EHDN Elections 2026 are open! Vote for the Executive Committee & Scientific and Bioethics Advisory Committee, now until 19 Oct. Your vote shapes how EHDN drives Huntington's disease research, trials & care. Vote: ehdn.genolive.de/index.php?pa... #HuntingtonsDisease #EHDN

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SocialHDLancos @socialhdlancos.bsky.social · 28/07/2026

Meet Charlotte Spearing – HD advocate, caregiver & EHDN's first young adult Exec Committee rep, changing how we talk about HD. 📖 Read her story in the latest EHDN News: ehdn.org/wp-content/u... #HuntingtonsDisease #RareDisease

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SocialHDLancos @socialhdlancos.bsky.social · 21/07/2026

📢 Registration for the EHDN Clinical Research Congress 2026! Join clinicians, scientists, advocates, and families in Krakow, 22–24 October, for updates across Huntington’s disease research, clinical development, clinical trials, regulatory perspectives, and community collaboration ehdn.org/ehdn2026/

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SocialHDLancos @socialhdlancos.bsky.social · 21/07/2026

📢 EHDN’s Occupational Therapy WG has published updated Clinical Tips for Huntington’s Disease – Seating and Lying, plus is developing new Community Mobility Tips (inc. driving) – bringing them to the EHDN Clinical Research Congress in Krakow, 22-24 Oct. Get involved: ehdn.org/occupational...

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SocialHDLancos @socialhdlancos.bsky.social · 15/07/2026

EHDN team at East Midlands HD Network event Jenny Townhill (EHDN & Cardiff University) presented on current clinical trials in Huntington's disease at the East Midlands HD Network event in Leicester, 11 July. The network is led by Sarah Gunn, Flaviano Giorgini & Reza Kiani (University of Leicester)

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SocialHDLancos @socialhdlancos.bsky.social · 10/07/2026

Congratulations to EHDN's Pavlina Konstantinova, Jenny Townhill & Juliana Bronzova, co-authors on a systematic review of the HD drug development pipeline (2014–2025) - a valuable resource for the HD community. Read it here: doi.org/10.1002/mds.... #HuntingtonsDisease #Research

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SocialHDLancos @socialhdlancos.bsky.social · 08/07/2026

📢 We've awarded our 100th Lesley Jones Seed Fund grant! To mark the milestone, we're surveying past recipients on the programme's impact. Received a Seed Fund award? Share your input 👉 form.jotform.com/kmk20/seed-f... #HuntingtonsDisease #Research

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SocialHDLancos @socialhdlancos.bsky.social · 01/07/2026

📰 The 58th issue of EHDN News is out now! Inside: EHDN Elections 2026 (vote by 19 Oct), a preview of #EHDN2026 in Kraków, the 100th Lesley Jones Seed Fund award, and an interview with Charlotte Spearing on changing the conversation around #HuntingtonsDisease. Read it here: ehdn.org/ehdn-newslet...

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SocialHDLancos @socialhdlancos.bsky.social · 01/07/2026

@ehdn-news.bsky.social Abstract submission for the EHDN Clinical Research Congress has been extended to 5 July. Poster presentations are a great opportunity to showcase your work to peers and to connect, collaborate, and engage across the #HuntingtonsDisease community: ehdn.org/ehdn2026/

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SocialHDLancos @socialhdlancos.bsky.social · 28/06/2026

We're live at #EAN2026 in Geneva! Come and visit the European Huntington's Disease Network at Booth N35 in the Neurohood - Stop by, say hello, and let's talk HD research and care! #EAN2026 #Neurology #HuntingtonsDisease #EHDN #Geneva2026 #ENROLLHD

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SocialHDLancos @socialhdlancos.bsky.social · 23/06/2026

**Bring your research to Kraków!** The call for abstracts is open for the EHDN Clinical Research Congress, Kraków, 22–24 October 2026. 🗓️ Submit 1–30 June 2026: na.eventscloud.com/eSites/87596... Questions: krakow2026@ehdn.org #HuntingtonsDisease #EHDN2026 #ClinicalResearch #HDCommunity

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SocialHDLancos @socialhdlancos.bsky.social · 03/06/2026

Happy birthday!! The HD patient association of Valencia, Spain, just celebrated their 25th birthday at the Instituto de Investigación Sanitaria La Fe. Our Lanco Marta was there to discuss Enroll-HD. Find out more at iislafe.es. #HuntingtonsDisease #HuntingtonsDiseaseAwareness

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SocialHDLancos @socialhdlancos.bsky.social · 01/06/2026

Porta San Niccolò, in Florence, lit up for #Lightitup4HD! It was the kick-off of the festival #AREA4HD, organized by That Disorder. This festival brings art and science to raise education and awareness, building connections and using art as tool for advocacy. #HuntingtonsDiseaseAwareness

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SocialHDLancos @socialhdlancos.bsky.social · 28/05/2026

And that's a wrap for this Lanco meeting in Brussels. It was great seeing everyone and catching up on #enrollhd and #huntingtonsdisease science progress. See you all in Krakow at #EHDN2026

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SocialHDLancos @socialhdlancos.bsky.social · 26/05/2026

HD patients at Bellvitge Hospital in Barcelona took some time out between therapy sessions to raise awareness for HD. Looking good in this month’s colors: blue for Huntington’s Disease, purple for juvenile HD! #huntingtonsdiseaseawarenessmonth #huntingtonsdisease

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SocialHDLancos @socialhdlancos.bsky.social · 25/05/2026

Sant Pau Hospital, in Barcelona, is one of our biggest Enroll-HD sites in Spain. The movement disorders group has an annual video meeting and they took that time to celebrate the HD Awareness Month. #HuntingtonsDiseaseAwarenessMonth #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 22/05/2026

The clinical genetics & research team at Leeds, one of our Enroll-HD sites, is looking sharp wearing blue for HD and purple for juvenile HD. #HuntingtonsDiseaseAwarenessMonth #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 21/05/2026

This year, the European Academy of Neurology’s Congress will open with a true scientific highlight: the Brain Prize Lecture by Professor Frank Winkler, joint winner of the Brain Prize 2025. Find out more at www.ean.org/congress2026 #EANeurology #EAN2026 #Neurology

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SocialHDLancos @socialhdlancos.bsky.social · 20/05/2026

Spain is on fire on this Huntington’s Disease Awareness Month! The HD team at FINBA, in Asturias, Spain, had a meeting with families earlier this month. They had fruitful discussions, coffee, and some lighthearted hanging out. #HuntingtonsDiseaseAwarenessMonth #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 19/05/2026

EHDN's Occupational Therapy Working Group has published updated and expanded their Occupational Therapy Clinical Tips for Huntington's disease - Seating and Lying: www.hda.org.uk/seecmsfile/?... Find out more about joining EHDN working groups at ehdn.org @hdai-ie.bsky.social #HuntingtonsDisease

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Reposted by SocialHDLancos

The Barker Lab @thebarkerlabgroup.bsky.social · 15/05/2026

Today, on International Huntington’s Disease Awareness Day, our team is wearing purple for Juvenile HD and blue for Huntington’s Disease awareness💜💙 Learn more about HD and the support available through the Huntington’s Disease Association: www.hda.org.uk #InternationalHDAwarenessDay

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SocialHDLancos @socialhdlancos.bsky.social · 13/05/2026

For more than 15 years, Hospital Universitario Cruces, in Bilbao, Spain, has been supporting families living with Huntington’s Disease. This HD Awareness Month, they came together wearing blue, the color of HD awareness, and absolutely lit up the room! #hdawarenessmonth #huntingtonsdisease

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SocialHDLancos @socialhdlancos.bsky.social · 12/05/2026

In the spirit of HD Awareness Month, the Leicester team showed up to their team meeting in beautiful blue to help raise awareness of Huntington’s Disease! Some staff members are also taking part in HDWalk26. Go Leicester! #HDAwarenessMonth #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 05/05/2026

May is #HDAwarenessMonth, and the Enroll-HD centers and patient associations are already hard at work! Check out ASHUBI—Asociación Huntington Bizkaia (ashubi.org) rocking this month's colors while organizing their annual meeting: blue for HD and purple for juvenile HD. #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 27/04/2026

All sessions will be open to clinicians, scientists, advocates, and family members. There will be opportunities to connect, collaborate, and engage across the Huntington’s disease community. Find our more and at: ehdn.org/ehdn2026/ #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 07/04/2026

Today, the occupational therapy working group met to discuss future clinical tips to improve HD patients' care. There are great thing to come! There is a working group for every HD expert. Check it out on the EHDN webpage. #huntingtonsdisease #occupationaltherapy

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SocialHDLancos @socialhdlancos.bsky.social · 23/03/2026

Today is #hdgratitudeday ❤️ We are proud to stand with the global #HuntingtonsDisease community in recognising the unique and ongoing collaboration between HD families, clinicians, and scientists.

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SocialHDLancos @socialhdlancos.bsky.social · 17/03/2026

"Beyond the Frame, Within the Journey: Documenting Life with Movement Disorders" invites all to share visual stories about the human side of living with movement disorders. thatdisorder.org #BeyondTheFrame #PhotographyContest #MovementDisorders #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 09/03/2026

Join @factorh_org for this year's gratitude day on Sunday, March 22 | 9:00 AM PST | 12:00 PM EST| 16:00 PM GMT | 17:00 PM CET, livestreaming from Venezuela. Register on their webpage (www.factor-h.org). Also, post your picture with H-hands with the hashtag #hdgratitude.

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SocialHDLancos @socialhdlancos.bsky.social · 02/03/2026

Latest Newsletter now released! Highlights include the Path4HD-ISS2 initiative, a multidisciplinary educational course in Latin America, and the latest developments from EHDN-endorsed studies, as well as Enroll-HD and HDClarity. Read the full issue here: lnkd.in/eSWzMTPX

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SocialHDLancos @socialhdlancos.bsky.social · 10/02/2026

Enroll! Newsletter translations are on their way! You will soon be able to find them at enroll-hd.org/for-hd-famil... #EnrollHD #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 22/01/2026

"A love story in a scientific journal" - this is how Alex Fisher describes her article about the development of a Caregiver Programme in Barranquitas through Factor H. Read it at lnkd.in/eqGAUQk6 #FactorH #HuntingtonsDisease

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SocialHDLancos @socialhdlancos.bsky.social · 22/12/2025

Let's build on the success of 2025 to make even greater things happen in 2026!

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Reposted by SocialHDLancos

HDClarity @hdclaritystudy.bsky.social · 17/12/2025

Great connecting with fellow investigators at the HDClarity Investigator Meeting during the Clinical Research Congress in Nashville 🎶🧠 Insightful discussions, valuable collaboration, and exciting progress ahead! 📊 Presentations from the meeting are now available on the HDClarity.net website.

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Reposted by SocialHDLancos

HDBuzz @hdbuzzfeed.bsky.social · 11/12/2025

A new Swiss study provides important insight into how CAG repeats in the Huntington’s disease gene can grow or shrink within our cells over time, improving our understanding of the forces that shape HD progression. Full Article: en.hdbuzz.net/a-tug-of-war...

en.hdbuzz.net

A tug-of-war at the DNA: how Huntington’s repeats grow and shrink – HDBuzz

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