Iceland is one of the smallest countries in Europe, which represents both a challenge and a catalyst to make Huntington’s disease visible. The HD Association of Iceland was founded at the beginning of 2022 and currently has around 30 members.
We had the opportunity to talk with Gunnhildur Sif Oddsdóttir, who has been the president since June, to learn more about the work they are doing.
Before becoming president, Gunnildur was a board member. She found motivation and inspiration to become a volunteer with the idea of being part of the solution, since there was no association when she was growing up, an experience she hopes is different for the newer generation.
“When I was a teenager and my mother was sick, there was no association. When I was asked if I could take the position, I thought: If something is missing, maybe you need to be part of the solution.”
— Gunnhildur Sif Oddsdóttir, President of Iceland’s HD Association
The association’s current focus is on making information available and accessible to everyone, while establishing professional references, and raising awareness, both among the general public and within HD families.
Gunnhildur highlights the importance of breaking the stigma surrounding HD and creating community by letting families know that they are not alone. It’s important for families to see that there are others out there, who share similar experiences and stories, something that is encouraged during the association’s weekly coffee gatherings, which have become a cherished routine for some members.
Another key goal and part of their mission is to make medical specialists more aware of HD realities and establish a solid network, both between professionals and between professionals and families.
Being part of the EHA helps the Icelandic association stay informed and be inspired about things they can advocate for in their country.
One of the challenges that comes with being in a small country is that it is difficult for professionals to specialize in a single rare disease, because there are not enough patients for them to work with daily. To adapt to this reality, the association hopes and advocates for the creation of a center dedicated to treating rare diseases where HD patients can be referred to.
An exciting project the Association has published recently is a short film about HD, in which both professionals and family members with different perspectives had the opportunity to participate. The idea was organized by the former president of the Association, Sveinn Viðar Guðmundsson, who reached out to Iceland’s film school where he found Andri Freyr Gilbertsson and Aron Pétur Ólafsson who were interested in taking on the project.
We had the opportunity to talk with Gunnhildur Sif Oddsdóttir, who has been the president since June, to learn more about the work they are doing.
Before becoming president, Gunnildur was a board member. She found motivation and inspiration to become a volunteer with the idea of being part of the solution, since there was no association when she was growing up, an experience she hopes is different for the newer generation.
This initiative has led to new visibility opportunities, including articles in the media and mentions on radio programs. We hope this creative initiative inspires other associations to explore new ways of making HD more visible.
Another initiative that brings the community together each year is a charity race held every summer in Iceland, where participants run for different causes. The past three summers, HD families have come together and run 10k wearing their association t-shirts, posting on social media, and raising both funds and awareness.
As we wrapped up our conversation, we asked Gunnhildur what advice she would give to someone just beginning their journey of building an HD association:
“You have to go for it. There will be many challenges, but if you don’t try, you won’t succeed. It’s going to bring some good to some people, at least. Even if you don’t reach so many, but at least you will reach some people.”
— Gunnhildur Sif Oddsdóttir, President of Iceland’s HD Association
The story of Iceland’s HD Association is evidence that impact is not defined by numbers, every effort can spark meaningful change for the HD community. Even in one of Europe’s smallest countries, their work is creating connections, breaking the stigma, and raising awareness.
If your association has a story that can be featured in an upcoming Community Spotlight, we would love to know. Together, we can continue to highlight stories that inspire and strengthen the HD community across Europe.
– Article written by Jarelys López Delgado