WHY SHOULD YOU JOIN US AT HD CONFERENCES?
– Written by the Moving Forward Team on June 21st 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. After the last face-to-face meeting in Vienna in 2018, and after a virtual edition of the EHDN plenary meeting, it is time for professionals and families to meet again physically in one of the largest HD-related events in the world.
While mainly targeting researchers and clinicians, this EHDN biennial meeting is the perfect event to be updated about all the scientific progresses in HD and all the innovative approaches and recent breakthroughs in research and care. Importantly, this is also the moment for the European Huntington Association to conduct its Business Meeting and gather all the HD families attending the broader EHDN meeting. So there is an exclusive space and time dedicated to all HD patients and families that converge at this meeting coming from the most distinct places in the world. The registration is free for HD families, and you should definitely experience immersing yourself in the European HD Network for three packed days.
Here is what Minia García, a young Spanish woman who attended the EHDN Vienna meeting back in 2018, has to say about her experience:
« The problem with rare diseases in general and particularly with HD is that there is a lack of social awareness about them and often even healthcare professionals are not familiar with them. For this reason, both patients and their relatives are alone when facing these conditions and when looking for solutions to specific daily problems. Being in contact with others who have experienced the same as me, or who have been able to solve the same problems that I had to face was one of the reasons that made me want to attend this event.
Far from finding myself alone in the face of the disease, the meeting has opened the doors to HD-related topics that I had never considered, because at the congress I was able to meet patients, family members, friends, healthcare professionals with different backgrounds, etc. Communication and awareness are key things to cope with rare diseases, and events like these help in these two aspects and many more. Additionally, the congress organizers have given us the opportunity not only to address HD from a professional point of view, but also from a recreational point of view. »
The Huntington’s Disease Youth Organization has recently announced its first-ever in person meeting. After a regrettable postponement in 2020 and a virtual edition in the meantime, the HDYO meeting will happen in Glasgow – Scotland from the 17th to 19th March 2023. This will be the right place for the younger generations of HD families from all over the world to meet and connect. While the program is still being prepared, we are positive that this is the perfect opportunity to learn, teach, exchange and plan exciting things together with your peers. This is a unique event with talks and sessions tailored to the specific needs, worries and wishes of young adults affected by HD.
Here is what Juanma Melgar, a Spanish young man who attended the HDYO virtual meeting earlier this year, has to say about his experience:
«Thanks to a first contact with the president of the Spanish association ACHE, Ruth Blanco, I was able to connect with the Huntington’s Disease Youth Organization (HDYO). This first fortunate step made me attend the HDYO meeting. During the weekend of the meeting, which was held online on March 5th and 6th, I attended different sessions and talks where experts, family members, different representatives from different organizations and volunteers shared experiences and useful knowledge for those affected in one way or another by this disease. It has been my first time attending an international HD congress and besides learning a lot about the current scientific progresses, I was able to learn it from volunteers, family members and existing international collaborative networks.
After this experience, it is very clear to me that I want to continue collaborating with this world and I have applied to be part of an international group of youth ambassadors that aims to help improve the knowledge and facilitate the connections between people who have some kind of link with HD, as well as to offer information to all people interested in collaborating with this cause. The emotional burden that people of all ages and profiles around the world bear is very similar and I think that sharing that burden brings many benefits and can make us stronger to face this challenge. From where I stand, I encourage all the young and old persons, family members and friends to attend future meetings and congresses and to take advantage of these opportunities to grow, share, educate ourselves and (why not?) also to improve our knowledge of other languages and cultures!»
Last but most definitely not least, the European Huntington Association is currently planning its fourth conference to happen in October 2023. After three editions in Poland, Bulgaria and Romania, the EHA is more and more convinced about the importance of organizing a meeting exclusively dedicated to HD families. In fact, this is the only family-focused conference in Europe, and it has been increasing its numbers at each edition. Though the exact place of the conference and its program draft have not been announced yet, we are sure that this will be a remarkable experience for all the attendees. So please mark your calendars and save the date to make sure you don’t miss it!
Here is what Judit Sánchez, a Spanish young woman who attended the first EHA meeting in Warsaw back in 2015, has to say about her experience:
- «What motivated you to attend this meeting? To be able to have contact with people related to my situation, and to get more scientific knowledge about drug development and the current therapeutic progresses
- What were the main learnings you brought home? To get to know different points of view and different ways of giving voice to the disease.
- What would be your key message to convince HD family members to attend these events? Besides the learning time, there is a wonderful leisure and cultural time too, where you can have a lot of fun with people who are going through the same situation as you.
- Why is it important for HD family members to attend these meetings? To be aware of where we are on the drug development and clinical trial pipeline and how we can participate in them.»
Here is what Ekaterina Limaeva, a young woman from Barnaul in Russia who is the chairman of the lay organization “Stronger than Circumstances” has to say about herself and about the EHA conference she attended in Bucharest in 2019.
« I am a very active person and can’t stay too long at home. I also strive for social changes to happen to HD families and families with orphan diseases in Russia. Before I met Astri Arnesen, I have never been abroad. HD opened the whole world to me. Thanks to the HD community, I was able to make my first trip abroad and met different HD family members from different countries, listened to their stories, made friends, and shared my story. Now I daydream about upcoming trips. This gives me motivation to move forward.
- «What motivated you to attend this meeting? I wanted to hear the latest news about research from the representatives of pharmaceutical companies and meet participants from other countries.
- What were the main learnings you brought home? I brought updated information about HD clinical trials, lessons on how to train your body to prevent early disease onset, lessons about music therapy, important nutrition aspects and how other HD associations work.
- What would be your key message to convince HD family members to attend these events? It is so cool, if you have the opportunity to attend these conferences – just do it, you will not meet anywhere else so many HD professionals at one place if you don’t go there!
- Why is it important for HD family members to attend these meetings? To meet like-minded people and to fight your fears and break HD myths, because you can get reliable information about HD on these meetings.»
Here is what Lyudmila Glukhova, a woman from Russia who attended the EHA meeting in Bucharest back in 2019, has to say about her experience:
- «What motivated you to attend this meeting? Our family tries to attend every HD meeting in Russia and abroad, because it is a great opportunity to meet other HD families, and, importantly, to learn about HD research news in first-hand.
- What were the main learnings you brought home? For my daughter affected by HD these meetings are an emotional boost because she usually spends her time isolated at home. At such conferences she meets different people from other countries and has a chance to communicate with them.
- What would be your key message to convince HD family members to attend these events? I would advise any HD family that has resources to attend the EHA and EHDN meetings because these meetings take place in a friendly and familiar atmosphere.
- Why is it important for HD family members to attend these meetings? It is very important for us, HD families, to represent the community at these meetings and to show that we are willing to take part in clinical trials.»