aHUS Regional Meetings in Atlanta and New Jersey!
We are pleased to share details of two aHUS Regional Meetings planned by NORD. Patients and their families are encouraged to take advantage of the opportunity to learn, share, and discuss aHUS issues. Information below is provided by NORD, and will be posted in this site's EVENTS Forum for comments by aHUS website members.
The National Organization for Rare Disorders is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research,and patient services.
2013 Regional Support Meetings for Patients with aHUS
Atlanta - February 23rd
New Jersey - April 27th
The National Organization for Rare Disorders invites
patients and caregivers/families affected by Atypical
Hemolytic Uremic Syndrome (aHUS) to participate in a
special event to meet other patients and speak with a
medical expert.
This meeting will provide an opportunity for you to come
together in a small group, and gain the encouragement
and hope that comes from meeting face-to-face with
other aHUS patients.
Everyone will be able to share personal experiences
with each other, gain a better understanding of this rare
disease, and help others cope with the effects of their
illness.
NORD will support the efforts of the aHUS community
by sharing accurate and useful information, and will
explore ideas for future assistance.
Friday, February 22nd - Reception 7PM-9PM
Saturday, February 23rd
MEETING AGENDA
8:30 AM – 9:00 AM Breakfast
9:00 AM – 9:30 AM Introduction and Meeting Overview
9:30 AM – 11:30 AM Support Meeting with aHUS Expert (Dr. Greenbaum, see below)
11:30 AM – 12:00 PM Review of Available Resources
12:00 PM – 1:15 PM Lunch
1:15 PM – 2:45 PM Breakout Sessions
2:45 PM – 3:00 PM Break
3:00 PM – 3:30 PM Meeting Summary
GUEST SPEAKER
Larry Greenbaum, MD, PhD
Director, Division of Pediatric Nephrology,
Chief, Pediatric Nephrology, Emory-Children’s Center
Professor of Pediatrics,
Emory University School of Medicine, Atlanta, GA
LOCATION
Hilton Suites Atlanta Perimeter
6120 Peachtree Dunwoody Rd.
Atlanta, GA 30328
Please RSVP by February 12 2013
Allie Freitas
203-744-0100, ext. 226
afreitas@rarediseases.org
This is a free event.
Hotel accommodations (one night stay) provided if requested.
Please do not hesitate to contact us for questions concerning this event.
To help defray the cost of travel expenses there will be a small stipend
mailed to each patient after the meeting.
EDITOR'S NOTE:
After contacting Allie at NORD to RSVP (afreitas@rarediseases.org), please visit http://atypicalhus.ning.com/events/ahus-regional-meeting-atlanta to add your RSVP to this site, allowing our members to connect with other attendees. Thank you!
Views: 93
Tags: NORD, conference, meeting, support
Comment
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Comment by Judy Warner on January 25, 2013 at 10:28pm -
I am planning on attending the New Jersey meeting with my son who has Ahus. I am excited to meet other people living & dealing with this disease.
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Comment by Dana M Simone on January 8, 2013 at 11:47am -
Excited about this...will likely attend the NJ event in April since it's a lot closer and we can drive there.
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
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Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
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Cape Elizabeth, ME 04107
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