Attending the RARE Advocacy Summit For the First Time? Here’s My Experience

July 27, 2023

Becky at the 2022 Patient Advocacy Summit.

by Becky A. Benson

In 2022, I had the pleasure of attending my first Global Gene’s RARE Advocacy Summit. Having lost my youngest daughter to Tay-Sachs disease in 2012, when I was asked to attend as a speaker on a panel discussing grieving as a community, I knew I would be calling on my experience in the rare disease world as the Family Services Manager of the National Tay-Sachs and Allied Diseases Association (NTSAD) and demonstrating how we support one another, but what I didn’t expect to find was an entire new tribe of those who, ‘get it’. To my great surprise, that’s exactly what I found.

From the moment of my arrival, it was clear this was a place of belonging and support. Coping with a diagnosis others you, and in my case of child loss, you can come to represent every parent’s worst fear. It can make you feel so ostracized or even hidden from the rest of society. Often, it’s a lonely road to walk. One of the greatest gifts Global Genes has to offer is the reassurance that you don’t have to walk this path alone. I met up with many of the friends I’ve made in the rare disease world at the Summit and came away with just as many new friends too.

The RARE Advocacy Summit is full of informative, supportive, and connective sessions that help guide you through decision making, educate you on how to advocate, and empower you to take action in myriad ways. As a representative of NTSAD, I was able to connect with other parents and patient groups; some just starting out, and those who have been around for decades. We all have experiences to share and can learn from one another because while we are rare, we are mightier together.

I came away from each session I attended with pages of notes to call upon in my support work, and new colleagues with whom I could connect. Most importantly, it provided a space where I could share my daughter with others while continuing to expand on her legacy and honor her all-too-short life. The ability to see individuals for who they are, apart from their diagnosis, and understanding the impact we can all have in this world is imperative to our humanity as a whole. At the RARE Advocacy Summit, we are all one working together to serve this purpose.
IG: @babensonwriter

Becky with fellow panelist Liz Morris and keynote speaker Emily Rapp Black at the 2022 Patient Advocacy Summit.

Global Genes’ 12th Annual RARE Patient Advocacy Summit is one of the world’s largest gatherings of the rare disease community. The event is an opportunity for advocates to learn, network, and inspire each other as they interact with researchers, healthcare professionals, drug developers and other advocates during the three-day event that runs September 19 through 21 at the Sheraton San Diego Hotel & Marina on Harbor Island Drive in San Diego. RARE Advocacy Summit is part of Global Genes’ Week in RARE, and will be preceded by the RARE Health Equity Forum, September 18 and 19.

More about RARE Advocacy Summit

More about RARE Health Equity Forum

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