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NfL

Spoločnosť pre pomoc pri Huntingtonovej chorobe

NfL je proteín vďaka ktorému je možné predikovať progresiu HCH. 14 ročná štúdia tohoto proteínu preukázala, že zvýšenia hladín tohoto proteínu sa objavujú pred začiatkom symptómov HCH.Samotný proteín sa nachádza v mozgových bunkách ktoré ho začnú vylučovať v prípade problémov a stresu. Takto uvoľnený proteín sa dostane do krvi a preto je možné ľahko zistiť …

NfL Čítajte viac »

Raising Voices: An Online Session for Young People Caring for Parents with Neurodegenerative Diseases

Moving Forward

Raising Voices: An Online Session for Young People Caring for Parents with Neurodegenerative Diseases – Written by the Moving Forward team on 12th March 2025…

This Gratitude Day, HDBuzz Is Grateful For The Partnership Between HD Families And Scientists

HDBuzz (English)

Gratitude Day—Sunday, March 23rd—is a global initiative organized by Factor-H, celebrating the resilience and strength of Huntington’s disease (HD) families, particularly those in underserved communities—the same communities who have historically partnered with the medical and scientific community to advance research. In particular, the families from Venezuela, who did so much to help with our understanding of the disease.

It’s a day to reflect on the power of compassion, solidarity, and support, recognizing the contributions of caregivers, researchers, and advocates working to improve the lives of those affected by HD. For the HD community, Gratitude Day is an opportunity to amplify awareness, and inspire continued action toward a future with better care, resources, and ultimately, effective treatments, which must include families living in conditions of extreme vulnerability.

In honor of Gratitude Day, the HDBuzz editorial team interviewed Dr. Ignacio Muñoz-Sanjuán (aka Nacho), President and Founder of Factor-H, to learn more about their mission, help amplify their message and share in the meaning behind this inspiring day.

Factor-H

Understanding the Role of Medications in Sexual Dysfunction and Hypersexuality in Huntington's Disease

Help 4 HD International

In the realm of healthcare, especially regarding neurological disorders like Huntington's Disease (HD), discussions about sexual health...

Spánok a HCH

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Kvalitný spánok je veľmi dôležitý a zmeny v spánkovom režime sa pri HCH objavujú skôr ako klinické príznaky dokonca sa vedia objaviť až 15 rokov pre prvými symptómami.  V realite až 88% ľudí s HCH má problémy s kvalitou spánku. V článku pridali nasledujúce rady ako zlepšiť spánok : 1,Skúste prehodnotiť svoj životný štýl a …

Spánok a HCH Čítajte viac »

Huntington’s Disease Heroes: A Gratitude Day Feature on Factor-H

Enroll

There are heroes who walk among us. In the Huntington’s disease (HD) community, some of those heroes are the leaders of Factor-H—a nonprofit organization dedicated to improving the lives of HD families in underserved communities by providing humanitarian aid, education, and advocacy. Huntington’s is an unrelentingly cruel disease that afflicts families with generation after generation […]

Dni Huntingtonovej choroby III.

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Program PDFAk máte záujem o účasť na tejto konferencii prosím vypnite tento registračný formulár do 15.4. 2025 : https://forms.gle/HyEGVnaufDTS8JdH8 Rovnako sme pre Vás pripravili aj anketu, ktorá nám pomôže upraviť program podľa Vašich potrieb : https://forms.gle/M4Y6XACyNbUoPmzq8 Spoločnosť pre pomoc pri Huntingtonovej chorobe Vás chce týmto pozvať na konferenciu Dni Huntingtonovej choroby III. Ktorá sa uskutoční v …

Dni Huntingtonovej choroby III. Čítajte viac »

Huntington’s Disease Heroes: A Gratitude Day Feature on Factor-H

HDBuzz (English)

There are heroes who walk among us. In the Huntington’s disease (HD) community, some of those heroes are the leaders of Factor-H—a nonprofit organization dedicated to improving the lives of HD families in underserved communities by providing humanitarian aid, education, and advocacy. Huntington’s is an unrelentingly cruel disease that afflicts families with generation after generation of trauma, medical challenges, and overwhelming emotional, financial, and social burdens that can make even the simplest aspects of daily life a struggle.

What could make HD worse? Abject poverty so extreme that families are left utterly resourceless, living in tin-roofed huts with dirt floors without mattresses, electricity, or running water. This is the reality for some of the largest clusters of HD families in the world, located in South America—the same families that contributed to the research that discovered the gene that causes HD. Even still, every scientific advancement that the HD community hopes for and closely scrutinizes likely won’t make its way to these unimaginably vulnerable populations of people without help. That help is Factor-H.

March 23: Celebrating Gratitude Day in the Huntington’s Disease Community

News – International Huntington Association

“Gratitude Day is a way to honor the collaboration of HD families with clinicians and scientists, which started with the efforts to identify the Huntington’s disease gene in the 1980s, […]

2025 Scientific Presentations

CHDI Foundation

Deň vďaky za spoluprácu – Gratitude day

Spoločnosť pre pomoc pri Huntingtonovej chorobe

23. marec je dňom vďaky za spoluprácu rodín a profesionálov pri hľadaní lieku na HCH.   Sme partneri a podporujeme sa navzájom.Rodiny neustále ďakujú vedcom! Vedci ďakujú rodinám pri každej príležitosti. Ale tento deň je pre nás všetkých, aby sme uznali naše partnerstvo. Je to jedinečné! .Ak by niekto chcel pripojiť stačí sa od fotiť …

Deň vďaky za spoluprácu – Gratitude day Čítajte viac »

HCH Terapeutická konferencia 2025

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Deň I.    Začali rovno firmami : PTC Therapeutics – Votoplam :  Liek sa užíva formou tablety a podľa hladín Nfl zastavil progres ochorenia a vraj zlepšil aj niektoré príznaky. Viac sa dozvieme v lete keď podajú správu. Roche – Tominersen :  Liek dokončil nábor a výsledky budú v roku 2026. Wave Life Science – WVE-003 :  …

HCH Terapeutická konferencia 2025 Čítajte viac »

A huge thank you to Connie Daly, who turned her love of baking into an amazing event in aid of Scottish Huntington’s Association

When Bob Dylan Met Woody Guthrie

A keen amateur baker, Connie raised more than £1300 by teaming up with Pillow Partners, encouraged by her husband Holden […]

A huge thank you to Connie Daly, who turned her love of baking into an amazing event in aid of Scottish Huntington’s Association.

A huge thank you to Connie Daly, who turned her love of baking into an amazing event in aid of Scottish Huntington’s Association.

A keen amateur baker, Connie raised more than £1300 by teaming up with Pillow Partners, encouraged by her husband Holden […]

HDYO kongres 2025

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Chcem sa s vami podeliť o moje pocity z kongresu HDYO v Prahe, na ktorom som sa zúčastnila 14.–16. marca 2025. Cítila som sa tam naozaj výborne, celá udalosť bola nesmierne zaujímavá, obohacujúca a inšpiratívna.Určite viem, že to nebol môj posledný kongres.  Počas týchto dní som získala veľa nových a cenných informácií a nádej do budúcnosti. …

HDYO kongres 2025 Čítajte viac »

World champion rowers team up for event in aid of Scottish Huntington’s Association

When Bob Dylan Met Woody Guthrie

We are delighted to be the chosen charity for the 66th Women of Scotland Lunch. All proceeds will be donated […]

Landelijke Contactdag op 7 juni in Utrecht

Nieuws - Vereniging van Huntington

Twee keer per jaar organiseert de Commissie Contactdagen van de Vereniging van Huntington een landelijke contactdag. De eerste keer wordt 7 juni, en wel in de botanische tuin van Utrecht!

We ontvangen je graag met koffie/thee en wat lekkers in de serre van de botanische tuinen, die we de hele dag mogen gebruiken.

Na de lunch hebben we twee rondleidingen gepland, één voor de mobiele gast en de andere voor de wat minder mobiele gast.

Later op de dag komen we weer bijeen in de serre waar we samen onder het genot van een hapje en drankje de dag afsluiten.

De dag duurt van 10:00 uur tot 17:00 uur.

Aanmelden

Wil je ook komen genieten van de botanische tuinen en in contact komen met anderen die met de ziekte van Huntington te maken hebben? Je kunt je uiterlijk tot 24 mei opgeven bij het landelijk bureau, lb@huntington.nl.

Geef dan ook aan met hoeveel personen je komt en of er dieetwensen en allergieën zijn.

Tot 7 juni in Utrecht!

Advocate with us

Huntington Australia

With the 2025 Federal Election approaching, we need your help to ensure HD is on thepolitical agenda. By contacting your local...

Cindy Kruijthof nieuw Hoofd Landelijk Bureau bij Vereniging van Huntington

Nieuws - Vereniging van Huntington

De Vereniging van Huntington heeft een nieuw Hoofd van het Landelijk Bureau. Per 1 mei gaat Cindy Kruijthof deze functie vervullen. Ze is momenteel nog werkzaam als casemanager Huntington bij Atlant in Apeldoorn, dat met de locatie Heemhof een expertisecentrum Huntington heeft. De 50-jarige inwoonster van Loenen volgt Gabriëlle Donné-Op den Kelder op.

“Ik ben heel blij en word alleen maar enthousiaster”, is de eerste reactie van de van origine HBO-verpleegkundige op haar aanstelling. Ze vindt het een logische stap gezien haar raakvlakken en achtergrond om als Hoofd Landelijk Bureau te gaan werken. “Ik kijk er naar uit om mooie dingen neer te zetten met het bestuur.” In haar nieuwe functie zegt Cindy, die in 2022 de Master Social Work afrondde, zich te gaan inzetten om meer aandacht te krijgen voor de ziekte. Ze wil ook de vindbaarheid van de Vereniging vergroten voor families waarin de ziekte zo’n grote rol speelt.

The Huntington’s Disease Youth Organization’s World Congress: Supporting Young People Affected by HD

Enroll

The Huntington’s Disease Youth Organization (HDYO) is an international non-profit dedicated to supporting, educating, and empowering young people up to the age of 35 who are impacted by Huntington’s Disease (HD). Founded in 2012, HDYO provides a safe space for young individuals and their families to access resources, connect with peers, and find professional support. […]