HD Focus

Houston accountant Margaret Moncrieff (79) has completed her 13th Walk of Hope in support of families, including her own, who are […]

What a team! A huge thank you to Alan and Louise Provan of Provan Contracts in Lanarkshire for a champion […]

Today, on International Ataxia Awareness Day, we’re bringing awareness to a group of brain disorders known as Ataxia, which can take many forms. Like Huntington’s disease (HD), Ataxia is degenerative; it damages brain cells, causes changes in movement, and involves complex symptoms that worsen over time. HD and some forms of Ataxia have a shared genetic origin, and we’ll talk about medical and research overlap.

What is Ataxia?

Like HD, Ataxia is a rare form of neurological disease. It can lead to a variety of symptoms including lack of coordination, slurred speech, and difficulty walking - this can appear similar to the effects of alcohol. Ataxia is usually caused by damage to a part of the brain that coordinates movement, known as the cerebellum, which is located at the back of the head right above the neck.

Välkomna på stödgruppsmöte i Helsingborg den 21/11 kl 18.00-20.00. Läs mer och anmäl dig nedan! Hoppas vi ses!  

Inlägget Stödgruppsmöte Helsingborg 21 november kl 18.00 publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Se dovessimo sintetizzare il lavoro della nostra Associazione, lo spirito che lo motiva, sceglieremmo queste due parole: Ti penso. L’obiettivo è quello di esserci per tutte le famiglie Huntington.

L'articolo Due parole: Ti penso proviene da huntington-onlus.

Diante da intensa programação do Setembro Verde e Rosa, com palestras de especialistas, lives e campanhas nas redes sociais, decidimos concentrar nossos esforços nessas ações. Por esse motivo, foi cancelada a roda de conversa #HuntingtonEmPauta deste mês. Porém, continuamos à disposição para tirar qualquer dúvida ou fornecer informações sobre a DH através dos nossos canais […]

O post ADIADO: Roda de Conversa ABH – Setembro/24 apareceu primeiro em ABH - Associação Brasil Huntington.

En nuestro artículo anterior, introducimos varias cuestiones importantes que deben plantearse a la hora de formar una familia en el contexto de la enfermedad de Huntington.   Si tras haber realizado […]

La entrada Planificación Familiar: Opciones Reproductivas en la Enfermedad de Huntington (Parte 2) se publicó primero en .

С радостью сообщаем , что стартовал наш новый проект, благодаря поддержке Фонда президентских грантов «Улучшение качества и доступности помощи пациентам с болезнью Гентингтона и их родственникам».14 сентября с.г. прошло первое… More »

The post Стартовал проект «Улучшение качества и доступности помощи пациентам с болезнью Гентингтона и их родственникам» appeared first on Центр помощи пациентам с орфанными заболеваниями.

"Hoop versus hype: op zoek naar de waarheid in recente Prilenia-berichten"

Dr. Sarah Hernandez*; vertaling dr. Gabriëlle. M. Donné-Op den Kelder

"Hoop versus hype: op zoek naar de waarheid in recente Prilenia-berichten"

Dr. Sarah Hernandez*; vertaling dr. Gabriëlle. M. Donné - Op den Kelder.

Dit artikel is gebaseerd op https://nl.hdbuzz.net/379, wetenschappelijk nieuws over de ziekte van Huntington geschreven door wetenschappers in toegankelijk taal.

 

EHDN Konferencia deň 1 : Zúčastnili sme sa dvoch blokov prednášok, prvý blok bol o zlepšení kognície vďaka tréningu a o problémoch s rečou. Tieto problémy boli skôr o schopnosti lepšie určiť štádium ochorenia podľa výslovnosti pacienta. Druhý blok bol a paliatívnej starostlivosti a o tom ako je ideálne rozhodnúť sa v predstihu čo ešte …

EHDN konferencia 2024 – Štrasburg Čítajte viac »

Durante la giornata di ieri, al congresso EHDN che si svolge dal 12 al 14 settembre 2024 a Strasburgo, Francia, sono stati presentati e discussi nuovi possibili meccanismi patologici che potrebbero spiegare vari aspetti delle malattie genetiche e offrire nuovi target terapeutici. Tra questi, particolare attenzione è stata rivolta ai meccanismi che coinvolgono la proteina […]

L'articolo Nuovi Meccanismi Patologici e Strategie Terapeutiche Discussi al Congresso di Ieri sembra essere il primo su corea di huntington -AICH ROMA ONLUS -.

Applications for the 2024 intake to the “Huntington’s disease: an enabling approach to supporting families” online module are now open. […]

Families in the Highlands who are living with Huntington’s disease hit Inverness city centre for a five-hour dance party to […]

Disclaimer: I have written this piece from a position of privilege - as an HD family member that has been fortunate to receive an education that allows me to deeply understand the nuances of Huntington’s disease. I know what it means not only at the biological level, but also at the family level. I am profoundly aware of the desire for a disease-modifying drug. But my hopes are tempered through the privileged lens of understanding complex scientific data and interpretation. Here, I report facts and my opinion of those facts with no vested interest in any specific therapeutic approach. If Prilenia feels errors have been made, they are invited to reach out and any factual corrections will gladly be made.

Recently, there have been a few press releases from Prilenia Therapeutics about their advancement of the drug pridopidine toward regulatory approval for the treatment of Huntington’s disease (HD). There’s also been mixed messaging about findings from pridopidine clinical trials and statements made by the company. Let’s break down what the research really says and what the recent press releases mean in the bigger picture.

MermaiHD Trial