Advocacy groups: I got more out of it than they did

Several years ago when I was a new genetic counselor, doe-eyed and fresh out of grad school, I made sure certain topics came up in every session I had with a family. I covered the facts: the family history I’d collected, a review of genetic patterns, and any genetic testing options the family needed to consider. I’d usually write down notes beforehand, just to be sure I didn’t forget something.

I didn’t really get it back then.

Sure, people came to me to learn the facts. That’s an essential part of genetic counseling that should never change. But people also wanted to share their experiences with me. They wanted someone to listen, and to recognize their path taken while navigating their family history (with all its twists and turns). And once I started listening, I realized that yes, I could appreciate their story. But what they might also need is to connect to others in a similar situation – to feel less alone. Very quickly, one of my session “requirements” became discussing patient advocacy groups. That’s why we worked with many of them to review content and support us for this website; you can find these groups here.

Now, I should say right away that joining a group isn’t for everyone. And not everyone needs to join one at the same time. Sometimes, joining an advocacy group right after learning you have a diagnosis of hereditary cancer is just too much, too soon. Maybe later is better. Despite this, I still always mentioned it in my sessions so people knew the group existed – in case someone did want to reach out right then. And from what I learned and what Eve Mart said in her recent post, connecting with an advocacy group can help you help others, stay on top of the latest issues in your patient community, and so much more.

Reaching out to a patient advocacy group isn’t just helpful for patients! We in the medical field benefit from doing the same thing. It keeps us close to you, the people we want to help, and reminds us of the things that matter to you. We might just join to learn, or we might be in an advisory capacity (such as on a Scientific Advisory Board, as I was for the HBOC Society a few years ago). You might even find us writing scientific content (as I did for Willow Breast & Hereditary Cancer Support some time back) or speaking at a conference. So for you healthcare providers out there: get connected to an advocacy group. You’ll get more out of it than they will.

I’ve gone to many scientific and medical conferences over the years, but truly, the ones I remember most are the ones held by patient advocacy groups. Facts can be forgettable, but hearing about someone’s journey with hereditary cancer never is.



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