aHUS Meet-Up: What’s on the Agenda?

Make sure to check out our first two articles on the aHUS MeetUp Series here and here.

Are you a atypical hemolytic uremic syndrome patient or parent of a patient? Multiple meetup groups sponsored by Alexion and hosted by Global Genes are moving through the US to offer a place for the aHUS community to unite.

These meetups are planned to maximize the community’s chance to learn and share.

There will be speakers including

• Carrie Ostrea, Global Genes Team Member as well as parent advocate
• Chatchawin Assansen M.D., aHUS Medical Updates and Discussion Q/A
• Maya Doyle, LCSW-R, Ph.D., with insights and tools for patients and families
• Sue DeFrancesco R.N., CCM, OneSource Case Manager
• Linda Burke, aHUS Patient Advocate for the Atypical HUS Foundation

Tonia Sina, an aHUS Patient Advocate provided the welcome at the Pensacola Meetup earlier last month.

“I shared my own experience with aHUS, but most of my time spent speaking was focused on the methods that we, as chronically ill people, choose to use in order to suvive our day-to-day struggles. “

Speaker Robert Miller also had a chance to speak with past attendees.

“Having worked with families with special medical and developmental needs for more than forty years, I could immediately see the important gap that the Global Genes Meetups were addressing and the critical needs they were filling,” said Miller.

“Without exception, patients and parents told me how much the Meetups meant to them and how appreciative they were of Global Genes and the other organizers. It’s a model that could and should be replicated throughout the rare disease world!”-“

The purpose of these meets up is to allow patients to meet with other families affected by aHUS to discuss the challenges of living with aHUS and new strategies for managing the disease and gain valuable information and support on:

• Disease and treatment
• The effect of isolation on patients and families
• Challenges of being an adult patient versus a family with a sick child
• Resources and support for patients, families and caregivers

aHUS Testimonial LuizNunez from Global Genes on Vimeo.

2015 Meetings