It was summer 2017 when I stumbled on the webpage of the European Huntington Association. At that time I was taking my first steps in the Huntington world. Having tested positive for the gene a few years earlier, I was now longing to be part of a community.
Written by Rob Haselberg, first published in the EHDN Newsletter
I had attended some national events in the Netherlands, where I come from, and had started to do some volunteer work for the Dutch Huntington association, but I wanted more.
So when I found an announcement for a European patient meeting I was intrigued and registered on the spot.
Flash forward a few months: it’s the end of September 2017, and I am at the EHA conference in Sofia, Bulgaria. Having gone there on my own I do not know anybody.
The programme starts with a country roll call and I receive two great surprises: first, all the countries in Europe seem to be represented, and second, there are so many Dutch people present! Instantly I feel less alone.
A conference can be judged in many ways. What struck me about the one in Sofia was the deep connections people made there. The presentations were powerful, meaning they automatically sparked discussion.
Not long into the proceedings I already felt a part of the Huntington family – hugs included.
Being able to share and understand at the same time was such an eye-opener for me. To be honest, I do not fully recall all the talks, but I vividly recall the people.
In those three days I made friends for life.
I left Sofia with a lot of energy and the realisation that I wanted to be more involved. I wanted to contribute to the wonderful experience I had just had, so to speak.
I volunteered with the European Huntington Association and an opportunity to help soon presented itself.
The leading Huntington’s disease patient advocacy organisations had just formed a global coalition called HD-COPE (Huntington’s Disease Coalition for Patient Engagement), with the aim of giving families affected by HD a voice in clinical research. After a short interview I was selected to join the initiative.
HD-COPE is a group of 24 gene carriers and carers who provide insights, mainly to pharmaceutical companies, on a variety of HD-related topics. The idea is that armed with a clearer understanding of our needs, such companies will be in a better position to tailor therapeutic interventions and clinical trials to those needs.
With the research and development process focused on the right things, it will also become more efficient—a win-win situation.
Photo: HD-COPE in New York during a meeting with Roche Pharmaceuticals
In the last year this approach has resulted in fruitful and open discussions with companies including Roche, uniQure and WAVE Life Sciences. Many of our suggestions have already been incorporated into the design of clinical trials.
I know I am lucky that my work provides the flexibility for me to maintain this level of involvement in Huntington’s disease affairs. My boss is very supportive and I am able to plan my own time. Not everyone is so lucky.
However, it’s important to remember that patient advocacy starts small. It can begin with sharing experiences and being there for people affected by Huntington’s, giving a lecture at a local school or sharing a Facebook post to raise awareness.
There are so many ways to contribute.
My journey in this Huntington world began after Sofia. Needless to say, when the next EHA conference was announced — in Bucharest, Romania, this coming October — I registered immediately.
This time, I know that many of my friends will be there, and I hope to make many more. So let’s connect and start sharing experiences.
Who knows, it could be the beginning of a great new adventure!
Rob Haselberg is an assistant professor in the Department of Chemistry and Pharmaceutical Sciences of the Vrije Universiteit Amsterdam, the Netherlands, and an HD family member. He can be contacted at: firstname.lastname@example.org