By Kara Ayik
It was nearly dinner time when I arrived at the hotel in San Diego, the evening before my first Global Genes conference would begin. After finding my room and freshening up, I bravely ventured out of my room in search of dinner.
As I walked down the hall towards the elevator, my eyes suddenly lit up. Someone I well recognized from Young Adult Representatives for Rare and the EveryLife Foundation was walking past me at a determined and speedy clip. Though I had never met her in person, I could tell from a glimmer in her eye she recognized me vaguely, probably through our connection with my son Evren, who lives with ASMD. I felt a little quiver of excitement, and then it hit me. Was this the beginning of some sort of celebrity conference?!
An introvert by nature, I summoned up my courage and introduced myself, and we had a quick but lively conversation. This was just the first of the memorable encounters I would have at the 2023 Global Genes conference.
The next day I woke up bright and early, having thoughtfully mapped out my agenda beforehand using my conference agenda which was organized into thematic tracks, such as one for caregivers.
Am I dressed appropriately? Which materials should I bring along? Oh, well, here goes.
After snapping a quick photo of the beautiful San Diego beach from the hotel’s plate glass window, I took the elevator down to the lobby and towards the conference rooms to start my Global Genes experience.
Honestly, I wasn’t quite sure what to think as I merged into the light crowd that was busy registering, setting up, and chatting amongst themselves.
One question that needed to be addressed rather immediately: Where exactly do I fit in with this group? What is my identity as a conference attendee when I am not a speaker, employee, or the leader of an advocacy organization?
Global Genes organizers to the rescue. Hanging from a professional display was a rainbow array of colored ribbons, each labeled with a different role like “caregiver,” “living with a rare disease,” “industry,” or “advocate.”
Looking at all the options, I suddenly felt better. I think I belong here. I chose a couple of the ribbons which I felt reflected who I was, peeled off the backs and stuck them carefully on my name badge.
As I wandered around the lobby, I first stopped to visit all the tables and gather little trinkets for myself. Then, after attending a few sessions, I realized that I was feeling compelled to try and define what exactly this Global Genes conference was. It had a strange air that was a mixture of shared history, grief, anticipation, hope, despair, joy, excitement, and curiosity.
Was it like a teacher conference, I asked myself, a conference for work?
No. Definitely not. The crowd of attendees came from a wide variety of backgrounds bringing with them expertise and knowledge from impressive ranges of professional and lay expertise.
Was it was like an NNPDF family support conference?
No, it wasn’t like that either. I didn’t personally know the attendees well. Almost none of them knew what ASMD was, though they all knew what rare diseases were.
I carried this question with me well into the next two days of the conference.
In hindsight, one of the best aspects of Global Genes 2023 was the opportunity to meet in person with such an incredible range of change makers and just genuinely kind and caring people in the rare disease space. Some of them I had met in person but hadn’t seen in years. Others were known to me only virtually (through the Internet), and yet others were completely new to my circle. Some were indeed among our rare disease celebrities, which gave me a little thrill.
Each time I interacted with one of these people, whether it was eye contact and a nod, a handshake, a brief or lengthy conversation, I felt reassured that my decision to the attend the conference and the sacrifices it entailed were all worth it.
The conference sessions, which give structure to the days, are generally informative and even moving or inspiring. But ultimately, it is the people who make the conference worth attending.
Today, a year later, I still hold in my heart and mind’s eye the opportunities I had to interact with some extraordinary people.
So in that light, if you are a first time attendee, let me suggest the following:
- Try to come with an open mind but also a basic plan that may involve making some arrangements for meet-ups before you go. I’ve learned that the regulars come with appointments set aside, which they usually schedule beforehand. But it doesn’t hurt to reach out, even at the last minute.
- If you are shy, try to step out of your comfort zone and meet some new people, perhaps by visiting some tables and asking about the different projects you see. Be brave and introduce yourselves to those sitting near you in sessions. I met some wonderful individuals that way.
- Be mindful that some appointments and meetings have been pre-arranged during networking and meal or snack times. One of my purposes for attending was to spend time in person with a particular advocate who lived abroad, so we arranged to have lunch together during which I had intended to ask a long list of questions. Unfortunately, another rare disease advocate spotted her, sat down, and began dominating the conversation with advice about grant writing. Fortunately, I was able to salvage a few minutes in the end. I loved it, and the short time we had helped strengthen our friendship bonds.
As I departed San Diego, gearing up to head back to work the following day, I thought about my mission to try and define the nature of this Global Genes conference. And what I decided is this: The Global Genes conference is its own unique experience that will be different from any other you may have had. Count yourself among the very fortunate if you have the chance to go, and enjoy it!
Read more posts from Kara Ayik here:
An Okapi in a Field of Zebras: On Rare Manifestations of Rare Diseases
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