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.

ahus2015

“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

 

Location Date Topics Info / Register
 Raleigh/Durham, NC  4/11/2015 aHUS Understanding and Q&AAvailable resources

Strategies for Living with aHUS

info / register
 Salt Lake City, UT  4/18/2015 aHUS Understanding and Q&AAvailable resources

Advocating for Your Health

info / register
Tampa, FL  5/2/2015 aHUS Understanding and Q&AAvailable resources

Advocating for Your Health

inforegister
 Pittsburgh, PA  5/16/2015 aHUS Understanding and Q&AAvailable resources

Nutrition and Exercise

inforegister
 New Orleans, LA  6/6/2015 aHUS Understanding and Q&AAvailable resources

Strategies for Living with aHUS

Register
St. Louis, MO  6/13/2015 aHUS Understanding and Q&AAvailable resources

Strategies for Living with aHUS

Register
San Francisco, CA 6/27/2015 aHUS Understanding and Q&AAvailable resources

Nutrition and Exercise

Register
Boston, MA  7/11/2015 aHUS Understanding and Q&AAvailable resources

Nutrition and Exercise

Registrationopening soon
Baltimore, MD 7/25/2015 aHUS Understanding and Q&AAvailable resources

Strategies for Living with aHUS

Registrationopening soon
Minneapolis, MN  8/8/2015 aHUS Understanding and Q&AAvailable resources

Advocating for Your Health

Registrationopening soon
Columbus, OH 8/22/2015 aHUS Understanding and Q&AAvailable resources

Nutrition and Exercise

Registrationopening soon
 Orlando/Clearwater, FL  10/9 – 10/11/2015 aHUS PediatricFamily Conference Registrationopening soon
Atlanta, GA 11/14/2015 aHUS Understanding and Q&AAvailable resources

Advocating for Your Health

Registrationopening soon
Phoenix, AZ  12/5/2015 aHUS Understanding and Q&AAvailable resources

Strategies for Living with aHUS

Registrationopening soon
 San Antonio, Texas 3/14/2015 aHUS Understanding and Q&AAvailable resources

Strategies for Living with aHUS

 Pensacola, FL  3/28/2015 aHUS Understanding and Q&AAvailable resources

Nutrition and Exercise

For more information, please email Carrie Ostrea, Advocacy Manager, at carrieo@globalgenes.org

1 thought on “Just Like Me: Rare Patients Talk Face-to-Face for the First Time at aHUs Meetups”

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