An inspiring online session for the Norwegian HD Community

– February 15th 2024

At the end of January, the Moving Forward team organized an online session for the Norwegian HD community with the topic “Genetic Testing for HD: There are no Right or Wrong Choices”.

We invited three people to tell their stories about their connection to Huntington’s disease and their experiences with HD genetic testing. Some months ago, when we conducted a survey to understand the needs of the Norwegian HD community, people told us they would like to learn more about genetic testing.

Inspiring videos in Spanish about Huntington's Disease research

 – 9th February 2024

In November 2023, we held the 4th Moving Forward Meeting in Spain. We met in Malaga, at the Centro de Innovación Social La Noria, and enjoyed an unforgettable day, full of valuable learnings on many aspects of Huntington’s disease.

We are very happy to share with you the recordings of some of the interesting presentations of the meeting. You will find the links to the several contents discussed in Malaga.

Welcome on board, Sweden!

 – 9th February 2024

The Moving Forward project has recently welcomed Sweden in the team.

This close collaboration between the European Huntington Association and the Swedish HD Association is starting with a survey dedicated to the experiences and needs of the Swedish HD community.

So, if you are from an HD family and you live in Sweden, this is just the right opportunity for you to get your voice heard!

Take this short, simple and anonymous survey before March 15th and help us to understand what your real needs are.

🇳🇴 Genetic Testing for HD: There are no Right or Wrong Choices

– January 24th 2024

The Moving Forward team is organizing an online session for the Norwegian HD community about Genetic Testing for HD (🕐 30th January, 18:00-19:00 CET).
We invited three people with different experiences regarding the HD genetic test (someone at risk, someone who tested positive and someone who tested negative) to share their personal stories with the attendees.

Participants will also have the chance to chat with each speaker more closely, ask questions and share their own personal experiences if they feel like it. Please join us in this informal gathering.

Register here for the online session

Norway, Sweden, Denmark, and Finland together at the Moving Forward Webinar!

– November 29th2023 

On the 22nd of November, the Moving Forward team held a webinar for the Scandinavian countries on HD research updates. There were just over 70 participants from Norway, Sweden, Denmark, and Finland.

We were joined by Astri Arnesen, Lasse Pihlstrøm and Åsa Petersen to talk about what is happening in HD research globally and what is happening specifically in Norway and Sweden.

Read the full article here  

Past, present and future in HD research: Summary of the 4th Moving Forward meeting in Spain

 – 21st November 2023

On November 11th, the fourth Moving Forward meeting in Spain took place in one of the warmest Spanish cities, Malaga. The meeting, with the topic “Past, Present and Future in HD research”, brought together more than 50 HD family members. Attendees came from almost all Andalusian provinces, Seville, Cadiz, Cordoba, Granada and Malaga, but also from other more distant Spanish cities, such as Barcelona, Valencia and Cantabria. The day was full of positive emotions and energy and, although there were some last-minute changes, everything went well.

Read the full article here

What are the needs of the French HD families? - A survey

– November 8th 2023 

The Moving Forward team is working together with the Association Huntington France (AHF) to assess the specific needs of the French HD community.

If you are from an HD family, you live in France and you want your voice to be heard, please use this opportunity to share what’s on your mind! Take this short, simple and anonymous survey before November 20th. 

The European Huntington Association and the Moving Forward team are very excited with this collaboration and hope that this French X-ray will help guide the work of the HD organizations in France.

Read the full article here

Webinar about HD Research Updates for the HD communities living in the Nordic Countries.

– November 3rd 2023

The Webinar will be on November 22nd, at 18:00 CET and it will be held in Norwegian.

Astri Arnesen, the President of the European Huntington Association, will speak about What’s happening in the world regarding HD research and Lasse Pihlstrøm, a Norwegian HD neurologist and researcher, will speak about What’s happening in Norway regarding HD studies and trials, and Åsa Petersén, an HD neuropsychiatrist and researcher based in Lund, will speak about what’s happening in Sweden regarding HD research. During the webinar, there will be plenty of time to answer any questions from the webinar attendees.

Read the full article here 

Past, present and future in hd research: the 4th Moving Forward meeting in Spain

 – October 12th 2023

On November 11th, from 16:00 to 19:30, we will have the 4th Moving Forward meeting in Spain, this time in Malaga. The meeting will be about “The Past, Present and Future in HD research” and several Spanish clinicians and researchers who have a lot of expertise in HD will present their tireless work to improve the quality of life of people impacted by HD.

Read the full article here

Moving Forward presented at the Youth Meeting 2023 in Norway

– October 4th 2023 

Every year, there is a youth meeting in Norway where young adults between 18 and 35 who come from an HD family can gather and bring their partners or family members if they want. This meeting takes place over a weekend full of presentations and activities for people to get to know each other better and increase their knowledge about several HD-related topics. This year the event happened in Sørlandet in Kristiansand.  

Read the full article here

Research Updates for the Russian HD Families: A Moving Forward webinar

– September 6th, 2023

The Moving Forward team has conducted several surveys that proved that information about research and clinical trials is always a priority for HD families all over the world, who are looking for an effective treatment to stop the disease. 

Therefore, the team organized a webinar for the Russian-speaking HD community on the latest developments in Huntington’s disease research.

Read the full article here 

"What can I do?" - A day full of emotions

– August 30th 2023 

The second informal meeting for people at risk of HD and people with premanifest HD took place in Madrid before the Summer break. This meeting was the space to formalize the ending of the psychological support online consultations, a project conducted by the Moving Forward team in Spain since December 2022.

Most of the participants in this pioneering initiative were able to travel to Madrid to have a final face-to-face group session led by the psychologist of the project, Francisco Iruela, and spend a really exciting day with the whole Moving Forward team.

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 22nd 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 15th, 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

“What Can I Do?” – The second informal meeting for people at-risk for HD and people with premanifest HD in Spain

– May 5th, 2023

The Moving Forward team is organizing the second informal meeting for people at-risk for HD and people with premanifest HD in Spain. The meeting will take place at the Centro Social Playa Gata, headquarters of ACHE – Asociación Corea de Huntington Española in Madrid, from 16:00 to 18:00 on the 1st of July (Saturday). 

Read the full article here

"Huntington's Disease Heroes" the newest book added to our Bookshelf section

– February 28th, 2023

The goal of this book is to share inspiring stories from the underrepresented HD community. We will meet true heroes who fight every day the fear and stigma surrounding Huntington’s disease. By sharing how their lives were shaped by the challenges they have faced, the authors want to empower the rare disease community and encourage others to speak up.

Visit the Bookshelf

"Uncomplicating HD Research": Videos of the 2nd Moving Forward Meeting in Valencia

– January 17th, 2023

In November 2022, we have organized the 2nd Moving Forward meeting in Spain. We were lucky to have with us several clinicians and researchers strongly committed to Huntington’s Disease, who work round the clock to find the best therapies to improve the quality of life of all those impacted by this disease. 

Watch the videos here

New Online Psychological Support Service in Spain

– January 10th, 2023

The second Moving Forward meeting in Spain that happened earlier this month in Valencia was the stage to announce the launching of a new Moving Forward service for the Spanish HD community – an online psychological support service exclusively dedicated to people at risk for HD and people with premanifest HD 

Read the full article here

Moving Forward in Belgium

– January 10th, 2023

The Moving Forward team has been working in close collaboration with the two HD Associations that exist in Belgium, the Huntington Liga, which serves the region of Flanders and the Ligue Huntington Francophone Belge, which serves the region of Wallonia.

Read the full article here

Our 2023 upcoming plan for the Huntington community!

– January 3rd, 2023

🥳 The Moving Forward team wishes you a Happy and Bright New Year and wants to share some of the exciting project plans for 2023. We hope to meet you on this new journey around the sun!

Watch the full video here

The Moving Forward team says goodbye to 2022

– December 28th, 2022

Looking back and recollecting what has been done during this year.
We wish you happy holidays and a joyful new year! We look forward to meeting you in person in 2023 💜.

Watch the full video here

Uncomplicating HD Research: Mission Accomplished

– November 28th, 2022

On November 12th, in close collaboration with AVAEH – Asociación Valenciana de Enfermedad de Huntington and the Instituto de Investigación Sanitaria La Fe we were able to bring together a fantastic group of Spanish clinicians and researchers who are completely committed to providing the best care possible to HD families and to finding effective therapeutic options for those impacted by HD.

Read the full article here

Bookshelf - Open Books, Open Minds!

– November 10th, 2022

The Moving Forward team is happy to announce a new feature in the Moving Forward webpage, the Bookshelf. The team has compiled many interesting books of different genres, all of them related to Huntington’s Disease (HD). Here you can find a comprehensive list with a summary of each book and additional information about where to buy or read it online 📖

 🎯 Since one of the main goals of Moving Forward is to increase the health literacy and provide reliable information to the HD community, the project team thought it would be interesting to have a new section dedicated to all you book lovers out there.

Take a look at our international bookshelf

Moving Forward Poster Trilogy at the EHDN2022 Bologna Meeting

– October 18th, 2022

Filipa Júlio, the Moving Forward Project Manager, and Ruth Blanco, the Moving Forward Project Coordinator in Spain, attended the EHDN Plenary Meeting in Bologna last month. This was the first opportunity to present in-person the Moving Forward (MF) work to more than 1000 participants from all over the world who attended the largest and more important international HD conference.

Read the full article here

CIEHNCIA: Uncomplicating research for the Huntington Community

– October 13th, 2022

On November 12th the European Huntington Association/Moving Forward team in collaboration with AVAEH – Asociación Valenciana de Enfermedad de Huntington and the Instituto de Investigación Sanitaria La Fe will held the 2nd Moving Forward meeting in Spain – this time in sunny Valencia.

Read the full article here

Online Conversation (in Spanish) with French Adventurer Dimitri Poffé

– August 18th, 2022

Last June, our Project Coordinator in Russia, Zaynab Umakhanova, had the opportunity to interview Dimitri Poffé and learn everything about his project “Explore for Huntington”.

Because of this project, which got him cycling all over Latin America for the last 6 months, Dimitri has also learned to speak Spanish.

Read the full article here

The Moving Forward “Let Us Talk” work was among the top scoring presentations at the European Conference on Rare Diseases & Orphan Products

– July 18th, 2022

In a busy month of work dissemination, Filipa Júlio, from the Moving Forward team, attended the 11th European Conference on Rare Diseases & Orphan Products at the end of June.

This online event was joined by over 800 people from the rare diseases’ community across Europe and it was thought to be the perfect platform to showcase the Moving Forward work about “Let Us Talk: A Communication Skills Training Course for Healthcare Professionals working with Huntington’s Disease”

Read the full article here

Moving Forward presents E-Poster at the Congress of the European Academy of Neurology

– July 18th, 2022

At the end of June, Astri Arnesen and Filipa Júlio, from the Moving Forward team, attended the 8th Congress of the European Academy of Neurology in Vienna, Austria.

The European Huntington Association had two presentations at the Congress: an oral communication about the Involvement of HD Families in Research by Astri Arnesen, and an e-poster presentation about the Factors Influencing Research Participation in Huntington’s Disease: Clues from Southern and Eastern Europe by Filipa Júlio.

Read the full article here

Moving Forward does "De Ronde"

– July 16th, 2022

“De Ronde” is one of the names of the “Tour the Flanders”, a road cycling race held in Flanders – Belgium every year.

Earlier this month, Filipa Júlio, from the Moving Forward team, was invited by Bea De Schepper, Vice-President of the Huntington  Liga, the Flemish HD Association, to visit the beautiful region of Flanders in Belgium and meet the different stakeholders and key organizations of the Flemish HD community

Read the full article here

Why should you join us at HD conferences?

– June 21th, 2022

After a (too long) pause due to the pandemic, the HD community is excited to return to the normal pace of global conferences dedicated to Huntington’s Disease.

The European Huntington’s Disease Network is preparing the last details of the first in person meeting post coronavirus shutdown. You still have about one month left to register for the EHDN2022 Plenary Meeting that will take place in Bologna – Italy, from the 16th to 18th September 2022.

Read the full article here

Keep Hope, Enjoy Life to the Fullest and Fight Your Fears

– June 7th, 2022

Interview with the Founder of the Project “Explore for Huntington”, the French Traveller Dimitri Poffé.

The HD community shows a unique solidarity and tons of inspiration when sharing their life stories. Dimitri Poffé is one of those people who stimulates  the HD community. About a year ago, Dimitri started the project “Explore for Huntington”, which got him travelling by bike all over Latin America to raise awareness about Huntington’s disease, to meet HD families and learn about their stories.

Read the full article here

First Moving Forward National Meeting in Spain: “The Uncertainty Of Waiting”

– May 24th, 2022

On May 7th, the Moving Forward team has promoted for the first time in Spain a national meeting specifically directed to possible HD carriers and people with premanifest HD. For most participants, it was the first time ever attending an HD- related meeting.

Read the full article here

Moving Forward at the 26th Congress of the Polish Huntington Association

– May 17th, 2022

In April 2022, the Moving Forward team was invited by Danuta Lis, the President of the Polish Huntington Association, to present the project to the Polish HD community at the 26th Congress of the Polish Huntington Association/ Polskie Stowarzyszenie Choroby Huntingtona.

Read the full article here

Participate in our Forum!

– May 6th, 2022

📣 Your voice can make a difference in the HD community!
The Moving Forward team has created a Forum, an online platform with several interesting topics about Huntington’s Disease.
 
Visitors will be able to ask questions, share experiences and connect with others:
  • This is your moment to speak and be heard.
  • This is your moment to learn from others and benefit from their experience.
  • This is the moment to use your voice!
 
Please share your thoughts, experiences & comments about this and other HD topics.
 

The uncertainty of waiting

– March 16th, 2022

On May 7th it will be held the first informal meeting addressing the group of pre-symptomatic or possible carriers of Huntington’s disease (HD) in Spain. The meeting will take place from 16:00 to 20:00 at Espacio Imaguru in Madrid and is promoted by the European Huntington Association (EHA), and by the Asociación Corea de Huntington Española (ACHE)

This initiative is part of Moving Forward, a project specifically aimed at these two groups. To confirm your presence, and due to the health measures related to the pandemic, please fill in this registration form

Read the full article here

LET US TALK! Online course "Communication Skills for Healthcare Professionals"

– December 7th, 2021

For the first time in Russia, there will be an international online course for healthcare professionals organized by the European Huntington Association (EHA) – Moving Forward Project. Top experts from different countries will meet on one online platform to share their knowledge and experience in treating and caring for people with a rare genetic neurological disease – Huntington’s disease (HD).

Read the full article here

Getting back to normal! The first Moving Forward face-to-face meeting after Covid!

– November 29th, 2021

The landing of Moving Forward in Spain has been brewing for several months. However, several circumstances have made it impossible for the team members to have direct contact, and so they always connected remotely, via e-mails and videocalls. Until now.

Read the full article here

Moving Forward travels to the Balearic Islands! We met up with the Balearic HD Association

– November 26th, 2021

As part of a business meeting planned between the Moving Forward Project team and the European Huntington’s Disease Association (EHA) for November, on Thursday 25th the Moving Forward team met face-to-face with members of the Balearic Huntington’s Disease Association team

Read the full article here

Survey about the Perceptions and Experiences of Research Participation among Persons at Risk and Persons with Premanifest HD

– November 14th, 2021

Moving Forward starts its activity in Spain, and we need you! We have created an online survey to find out the needs, concerns and desires of the Spanish community regarding their participation in research.

Read the full article here

Moving Forward in the November EHDN Newsletter

– November 12th, 2021

In the section “News in Brief” (p. 19), we had the chance to present the goals of the project, some of our latest achievements and the main actions we are currently working on.

Read the full article here

Moving Forward in Spain!

– November 3rd, 2021

After the presentation of the project in Russia, during this Summer,  Spain is the second country to join this initiative.

Read the full article here

Moving Forward at the 2nd Dutch Huntington’s Disease Symposium

– November 3rd, 2021

The Dutch results of the survey about the perceptions and experiences regarding research participation among people at risk and people with premanifest HD are going to be presented at the 2nd Dutch Huntington’s Disease Symposium in early November.

Read the full article here

Clinical Trials update - EHDN Online Plenary Meeting (September 2021)

– November 3rd, 2021

We were all hit by the setbacks in Roche and Waves trials earlier this year. But during the conference it has been demonstrated again and again that the work continues in a very good pace.  

Read the full article here

Moving Forward Survey in Russia

– September 23th, 2021

The project Moving Forward has recently started in Russia, in a close collaboration between the Orphan People and EHA.

One of the first actions within the project was to develop an anonymous online survey to assess the perceptions and experiences about research participation among persons at risk for HD and persons with premanifest HD in Russia.

Read the full article here

Moving Forward wins grant from the European Federation of Neurological Associations!

– September 20th, 2021

A Moving Forward subproject was one of EFNA’s chosen grant recipients in 2021, in a call with the theme “Personalised Health and Social Care”.

Read the full article here

Moving Forward at the EHDN2021 Remote Meeting

– September 20th, 2021

The EHA submitted a poster about the Moving Forward project to the EHDN2021 Remote Meeting that happened in early September.

Read the full article here

Paper about Moving Forward published on the Journal of Personalized Medicine

– September 20th, 2021

The EHA has recently published a paper entitled “Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington’s Disease: A Survey conducted by the European Huntington Association”

Read the full article here

Moving Forward in Russia: Meeting in Volgograd

– September 6th, 2021

On August 7, 2021 «Moving Forward» project was presented  in hero-city Volgograd. 14 members of HD families and 10 doctors- neurologists attended the Interregional School of Health for the families with HD where the project was presented by the Russian coordinator Zaynab Umakhanova.

The meeting was organized by the non-commercial charity organization “Orphan People” thanks to the support of the Presidential Grants Fund.

Read the full article here

Moving Forward in Russia: Meeting in Khabarovsk

– September 6th, 2021

The second  city to present the project was Khabarovsk, that is situated in the Far East of Russia. On July 24th , 2021 in a warm and comfortable atmosphere at the “Khabarovsk City” boutique-hotel.

During the interregional “School of Health”, organized by the center “Orphan People”, 12 HD  family members and 12 neurologists from Khabarovsk  gathered together to discuss topical questions that bother members of HD families.

Read the full article here

Moving Forward in Russia: Meeting in Tomsk

– August 5th, 2021

The European Huntington Association is happy to announce the launch of the international project «Moving Forward» in Russia! The first city to present the project was Tomsk, which is situated in Syberia.

17 members of the HD families and several doctors-neurologists attended the interregional “School of Health”, organized by the center “Orphan People”.

Read the full article here