Nyhetsportal

Her finner du informasjon om de siste nyhetene og oppdateringene innen HS, medisinsk forskning og multimedia

Previous slide

Next slide

Moving Forward, et prosjekt utført av European Huntington Association.

What people say about us

« Fabulous Project » « Very important project. You are doing your job very professionally, supporting and connecting people with HD in Europe, working together with researchers, neurologists, geneticists and other healthcare professionals, sharing information with HD families. »

Learn more

« Excellent initiative from the European Huntington Association, with all kinds of information and contents » « I had the pleasure of participating in one of the most spectacular HD events of my life thanks to the European Huntington Association »

Learn more

"Moving Forward is a fantastic project by the EHA that provides educational and emotional support to HD families! I am glad that I had the opportunity to be a part of its activities. It is an important step in connecting people affected by HD worldwide, in improving care, and in strengthening the HD community!"

Learn more

"I believe this is a unique project that moves science and society forward - towards awareness and a better quality of life for families, towards an understanding of the disease and, therefore, knowledge about the behaviour of people who suffer from HD, towards a better research process. I would like to say a special word about the website of the project - this is a unique place where you can find everything - books related to Huntington's disease, various resources on nutrition and care, clinical guidelines from different countries, video interviews with families. There is no other resource like it in the world."

Learn more

"The Moving Forward meeting has been a very positive experience for all of us, which has allowed us not only to strengthen the bond between clinicians, researchers, biobank and the patients and families affected by this disease, but also to share hopes and realities. Thank you very much for your effort and participation".

Learn more

"Moving Forward brings us all together, researchers, professionals, family members and patients. It gives us a face and enables us to speak without barriers, without fear, with confidence. The essential ingredient of meetings such as the Moving Forward meeting in Valencia are emotions, and these are undoubtedly provided by the testimonies of patients and their families. It is a privilege to be part of the unconditional HD community".

Learn more

"Young people who are pre-symptomatic or possible carriers of Huntington's disease are a group with great potential but often invisible. We need to pay more attention and increase the participation of this group in the global health and social movement of the wider Huntington family, as they are the ones who must lead the change. Moving Forward is an ideal project to promote unity, strength and coordination among those who share the same situation. It is about pursuing common goals and building a path towards a future in which the prevention of the onset of the disease is one of the research priorities."

Learn more

“Knowledge is Key - that is why the Moving Forward project is so important. It helps to inform the Huntington’s community about upcoming trials, supports people by providing information about the disease and empowers people by helping them raise their voices. I especially love the list of books related to HD in the bookshelf section. The Moving Forward project is an important resource for the HD community.”

Click Here

Previous slide

Next slide

Alt om HS

Vi har samlet pålitelig informasjon for å gi deg en oversikt over Huntingtons sykdom. Her finner du interessante, oversiktlige og pedagogiske lenker til artikler, FAQ-ark, videoer og lydfiler om sykdommens historie, grunnleggende trekk og symptomer. Vi tror at jo bedre du forstår HS, jo bedre forberedt vil du være på å håndtere diagnosen.

Forskning

Vi har samlet informasjon om tidligere, pågående og fremtidige kliniske studier på HS. Du vil også finne didaktisk innhold om det grunnleggende om kliniske studier og utvikling for legemiddelforskning. Vi tror at jo mer kunnskap du har om forskningsprosessen, jo mer proaktiv vil du være i den kollektive innsatsen for å finne effektive sykdomsmodifiserende behandlinger for HS.

Støtte

Vi har samlet ulike typer informasjon (artikler, videoer, podcaster, nettforum) for å hjelpe HS-familier med å tilpasse seg diagnosen og bli kjent med det globale HS-fellesskapet. Du vil finne verdifulle ressurser som gir psykologisk støtte og praktiske tips til hvordan du bedre kan takle utfordringene ved HS. Vi tror at jo flere verktøy du har for å takle HS, desto bedre livskvalitet og velvære vil du oppnå.

PROOF-HD: understanding the preliminary results and balancing our expectations

– June 12th, 2023

Prilenia presented the preliminary topline results of the PROOF-HD clinical trial (PRidopidine Outcome On Function in Huntington Disease) at the end of April. Last year, the Moving Forward team wrote a news piece about this trial.

Now, we look at the first findings of PROOF-HD and share our expectations for the near future. PROOF-HD enrolled 499 participants with early manifest Huntington’s disease (HD) in the U.S., Canada, Austria, Czech Republic, France, Germany, Italy, the Netherlands, Poland, Spain and the United Kingdom.

Read the full article here

Enroll-HD: 10 Years Observing HD

– March 15th, 2023

Enroll-HD is the world’s largest observational study being conducted in HD. This study is promoted by the CHDI Foundation, Inc. to speed up the development of effective treatments for Huntington’s Disease. Enroll-HD aims to observe and monitor how HD affects people and how it changes over time. It is focused on collecting a huge amount of demographic, clinical and biological information from the worldwide HD community with three specific goals: enhance the understanding of HD, support clinical trials and improve clinical care.

Read the full article here

JOIN-HD: A platform for Juvenile HD

– March 9th, 2023

JOIN-HD is a worldwide registry for families affected by Juvenile onset Huntington’s Disease (JoHD), which aims to shed light on this diagnosis, bring together those impacted by JoHD, increase awareness and knowledge about this condition, facilitate research and help advocate for better care.

Juvenile onset Huntington’s Disease is diagnosed when a 20-year-old person or younger develops unequivocal HD symptoms.

Read the full article here

Moving Forward: Hei Norway!

– June 7th 2023

The Moving Forward project has just started to operate in Norway. The European Huntington Association is working in close collaboration with the Norwegian Huntington Association, Landsforeningen for Huntingtons sykdom, to better understand the needs of the younger generations impacted by Huntington’s disease and provide them with adequate support and information.

Read the full article here

The European Huntington Association met the Icelandic HD Community – and was really impressed

– May 22^nd 2023

The European Huntington Association was very happy to attend the Conference of the newly established HD Association of Iceland.The meeting was held at the modern campus of the Reykjavík University on May 15^th, the International Huntington’s Disease Awareness Day.

About 50 family members, healthcare professionals and researchers attended this Conference with the topic “Developments in Huntington’s Disease: From Genetics to Therapy”, which was also live streamed.

Read the full article here

30th Anniversary of the HD Gene Discovery

– May 10th, 2023

30 years have passed since the HD gene discovery in March 1993. The EHA acknowledges every single day the impact that the discovery of the mutated gene that causes Huntington’s Disease (HD) has had on the global HD community.

At the same time, the EHA realizes that the younger generations from HD families are often unaware of the importance of this scientific breakthrough to so many aspects of their lives.

Therefore, the EHA/Moving Forward team is launching an online campaign with interviews to key HD family members and professionals who will share all the stories and details about this discovery.

This first video explains what happened in Venezuela 30 years ago and how this still impacts us today. The video is in Spanish, with English subtitles.

Watch the videos here