The Moving Forward project at the EURORDIS 2024
– June 18th 2024
The Moving Forward team attended the 12 TH European Conference on Rare Diseases and Orphan Products organized by EURORDIS in Brussels some weeks ago.
These were two intense days of learning and sharing, where more than 700 participants gathered (face-to-face and online) to strengthen the voice of
people impacted by rare diseases and discuss concrete measures to provide a better quality of life to all those living with a rare condition.
The conference culminated with a ceremonial signing of a co-created Open Letter to the European Commission, which details the expectations of the rare disease community for the next EU leadership and proposes a European Action Plan for Rare Diseases.
The Moving Forward project presented at Trinity College Dublin
– June 18th 2024
One month ago, the Moving Forward team was invited by the Archaeology Department of the Trinity College Dublin to participate in the workshop “Connecting Threads: Archaeology, Heritage and Community Wellbeing”.
We learned about many interesting projects taking place in Ireland, Italy or Cyprus, involving families with Huntington’s disease, but also other groups, such as people with Alzheimer’s disease, elderly, children or college students.
We left Dublin extremely inspired by the results of this confluence of knowledge fields, with our head loaded with lots of new information about potential new ways to serve the HD community.
HD Research Made Simple To The Nordic HD Community
– June 18th, 2024
Last week, the Moving Forward team organized the second edition of the
popular webinar on research updates for the Nordic countries.
Around 45 people attended the webinar to listen to what is happening in Sweden, Norway and Denmark regarding HD studies and trials.
The Moving Forward team thinks this is a great way to bring the HD community
closer to research, overcome the language and geographical barriers that prevent people from getting proper information and to increase the
knowledge of HD families about what’s going on in their country regarding HD
studies and trials.
The Sword of Damocles: Experiences of being at risk of Huntington's disease
– June 11th 2024
The Moving Forward team is organising another online session for the Spanish-speaking HD community to get to know different stories and personal experiences related to Huntington’s disease.
This session will focus on being at risk of Huntington’s disease and it will be held on Wednesday 26th June at 19h (CET).
This session will also focus on the book written by Luis, “Chronicle of a Fortune Foretold”, in which he shares the challenges of growing up in an HD family and living with a backpack full of many different things, including the uncertainties of HD, on his shoulders.
How can HD Families get the right help: The Norwegian Community comes together in another touching online session
– 9th May 2024
The Norwegian Moving Forward team hosted an online session titled “How can HD families get the right help,” featuring three family members who shared their experiences. The session, attended by 18 participants, was designed for open sharing and was not recorded.
Egil discussed the benefits of personal assistance for HD patients, providing stability and relieving relatives. The importance of youth gatherings for young adults with HD was also highlighted, mentioning an upcoming cruise to Kiel in September.
Participants shared their own stories and stressed the need for more information on carer rights and boundaries. The Moving Forward team thanks everyone involved, hoping the session was supportive and informative.
– May 9th, 2024
During the Annual Meeting of the Norwegian Huntington Association in Oslo last April, Julie Skarberg, the Moving Forward national coordinator in Norway, presented the project’s achievements and future plans. She conducted a survey to understand the HD community’s needs, which will inform upcoming initiatives, especially online sessions.
Survey responses revealed a strong interest in topics such as HD research, disease progression, testing, consent capacity, public assistance, nutrition, and exercise. The community also emphasized the need for better social support, advocating for more openness, peer interaction, and activity-based groups.
The community called for more advocacy events, psychological help, meeting places, and regular gatherings. Julie expressed gratitude for the support received and looked forward to continued progress with the Moving Forward team.
11th of May, an unforgettable day: The oficial presentation of the book "Crónica de Una Suerte Anunciada" (Chronicle of a Fortune Foretold).
– May 15th 2024
The day was full of surprises and brimming with emotions.
Moving Forward at the Norwegian Huntington Association Annual Meeting in Oslo
– 2nd May 2024
From 12 to 14 April 2024, the Norwegian Huntington Association held a seminar and annual meeting in Oslo, which was attended by around 60 participants.
This was a weekend where the Norwegian Huntington community came together and shared experiences and knowledge.
The Moving Forward team would like to thank everyone for a fantastic weekend, we feel that we couldn’t have had a better community around us and that we are really lucky to be part of this community where we support and help each other in difficult situations.
How can HD families get proper help?: Online Session for the Norwegian HD community
– May 3rd, 2024
7th May, from 18:00 CET to 19:30 CET.
The inspiring Chronicle of a Fortune Foretold from Luis Aguilar is now available on book!
– April 24th 2024
🙌 Join the French Online Session! Huntington: Unique disease - Multiple paths
– March 7th, 2024
The Moving Forward team, in collaboration with the Ligue Huntington Francophone Belge and the Association Huntington France are organizing an online session for the French-speaking HD community. The session will take place on 🗓️ March 26th, from 18:00 onward and it will not be recorded.
We invited six family members with different paths regarding HD to share their personal stories. Attendees will have the chance to hear about real-life experiences, ask questions and share their own personal stories if they want.
Register now to participate in this special meeting.
Upcoming Spanish Online Session! Huntington - One Disease, Dozens of Stories
– March 6th, 2024
The Moving Forward team is organizing an online informal meeting for the Spanish-speaking community to hear about different stories and personal experiences related to Huntington’s disease. The session will take place on March 21st, from 19:00 onward and it will not be recorded.
We have invited one person in each of these situations to share their stories: Being at risk for HD, being gene positive, being gene negative, being a patient, being a caregiver, being an HD professional and having a genetic test result in the gray zone.
This will be a unique experience!
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.
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.
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.
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.
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.
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.
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.
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.
"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.
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.
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.
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.
“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).
"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.
"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.
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
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.
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!
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 
.
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.
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.
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.
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.
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.
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”
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.
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
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.
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.
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.
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.
Participate in our Forum!
– May 6th, 2022
Your voice can make a difference in the HD community!- 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!
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
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).
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.
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
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.
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.
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.
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.
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.
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.
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”.
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.
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”
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.
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.
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”.