Every day, people around the world learn more about Huntington’s disease (HD). We know so much today, but we will know more tomorrow, and this knowledge will continue to exponentially grow.
Researchers, scientists, clinicians, patients, caregivers, and advocates all have knowledge to gain. If you ever think you know it all, you’d be wrong, unless you’re speaking to every one of these people every day. Sharing all of our knowledge is key to accelerating better care and treatments for everyone affected by Huntington’s.
One way to continue to learn is by attending annual Huntington’s disease conferences. They take place all over the world and are hosted by patient advocacy organizations and scientific and clinical organizations.
In the past, most conferences were typically available only to those who could physically travel and attend in person. A silver lining of the COVID-19 pandemic is that the conferences will be held virtually this year.
Following is a list of events to add to your calendar, and I encourage you to tune in.
Huntington’s Disease Youth Organization (HDYO) International Young Adult Virtual Congress
Dates: March 13-14
Registration: Open now
HDYO’s first Young Adult Congress was originally scheduled to take place last May in Glasgow, Scotland, but was unfortunately delayed, and then canceled, due to the pandemic. Instead, HDYO will hold a two-day virtual congress in March.
Join young adults ages 18-35 who are affected by HD for a host of information about clinical trials, living in a family with HD, genetic testing, having children, caring for a parent, and more. I have the opportunity to speak during this conference and hope to share some of the HD knowledge I have gained. Come join me!
CHDI Foundation’s 16th Annual HD Therapeutics Conference
Dates: April 27-29
Registration: Opens in mid-February
If you want HD science, this is your conference! Geared toward university researchers and pharmaceutical companies, the conference will include sessions such as: “Human Genetics: Modifiers & Mechanisms Towards Medicines,” “Preclinical Stage HD Programs,” “Putative Biomarker Candidates for Huntingtin Lowering Programs,” and “Clinical Stage Interventional Programs.”
I once had the opportunity to attend, and the content was well over my head. But it’s a phenomenal opportunity for smart science brains to come together and learn and share from one another.
Huntington’s Disease Society of America (HDSA) 36th Annual Convention
Dates: June 10-12
Location: Spokane, Washington (depending on public health guidelines)
Registration: Not yet open
The HDSA annual conference is the largest gathering of Huntington’s families and advocates in the world, with typical in-person attendance reaching over 1,000. As of this writing, the HDSA is still trying to determine if a modified in-person conference is doable with COVID-19, or if the conference will be entirely virtual.
Even if this year’s conference is virtual, it is a great opportunity to absorb knowledge from clinicians, patient advocates, pharmaceutical companies, and more. Also note that HDSA offers a host of learning opportunities throughout the year, from YouTube videos to articles and webinars. To stay abreast of all events, follow the organization on Facebook.
Help 4 HD International Virtual Symposium
Location: Orlando, Florida
Registration: Not yet open
Help 4 HD hosts numerous virtual learning opportunities throughout the year, but their annual symposium is the main event. Scheduled for sometime in October, join their team and a number of awesome clinicians and advocates. You can check out the agenda from last year’s virtual symposium.
Huntington Study Group (HSG) Annual Meeting
Dates: TBD (typically held in November)
Registration: Not yet open
The annual HSG meeting typically offers two or three days of training and education for the clinical research teams from the HSG Study Sites around the world. The updates they receive are centered around clinical trials, medications in development, and other topics that relate to their research efforts.
The fourth and final day involves a family day symposium, where families can come together to receive updates and knowledge from different advocates and pharmaceutical companies.
I hope you can attend one or all of these events. One single person isn’t going to find new treatments or figure out how to offer the best care. It’s going to take all of our combined knowledge and efforts to figure this out. Please comment below what you’re most looking forward to learning about HD in 2021!
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.36th Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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