Just Like Me: Rare Patients Talk Face-to-Face for the First Time at aHUs Meetups

They’re never in the waiting room. You’d be shocked to meet one in the emergency room. You search and you wait and you wonder if you’ll ever really meet someone who can understand what living with this rare disease is like.

Your doctor asks: do you want to try this new medication? You give him a blank stare. If you can’t ask him—then who are you supposed to ask?

What will this disease look like at age ten or twenty or fifty-five? What are you supposed to do TODAY to make the inevitable of tomorrow easier?

These are the questions that patients with Atypical Hemolytic Uremic Syndrome ask themselves every day—and thanks to a new meetup program organized by Global Genes with an educational grant from Alexion—over the next few weeks they’ll find themselves face-to-face with patients just like them. It’s an opportunity to ask questions, and to answer them—to recommend doctors and medications, learn about new treatment and to know that yes, there is someone out there just like you.

In fact, sharing experiences with other patients and families affected by aHUS can help decrease isolation and provide valuable information and support.

“I leave the meet ups with a greater feeling of understanding and community,” says past attendee, Jill Ziegler. “The meet ups definitely take away the loneliness feeling that comes along with a rare disease. And each meet up I attend, my support group grows. And we all need each other.”

There about 200 identified cases of aHUS in the United States. These patients will get their chance to interact in person through a series of 14 meetup events across the country.

2015 Meetings

For more information, please email Carrie Ostrea, Advocacy Manager, at [email protected]