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”.