Check out what our friends in India did back in February. We all know that dialysis can be very hard on the body and keep you from doing every day activities let alone any kind of exercising. Well our friend Kamal Shah who runs the Atypical HUS India Foundation is also the co-founder of NephroPlus which is India’s leading dialysis network provider. And NephroPlus organized the first ever Dialysis Olympiad in India that was held on Feb 15, 2015. It was a huge…Continue
The 2015 aHUS Regional Meetings are underway with attendance opportunities in 14 states. Each meeting will have a physician specialist that will discuss aHUS topics and answer questions in a group setting. There will also be guest speakers who provide insight and knowledge on nutrition, exercise, and strategies for dealing with aHUS. You’ll also have the opportunity to meet others who are affected by aHUS‐ whether they are patients (children and adults), parents, siblings, or…Continue
Concerned about getting the best care possible for aHUS patients?
If your loved one has aHUS, The Atypical HUS Foundation provides a list of volunteer physicians experienced with aHUS diagnosis, treatment options, and multi-organ issues that may cause complications for the aHUS patient. Let your doctor know about the Doc…Continue
Added by Linda Burke on March 26, 2015 at 10:30am — No Comments
“How to Discuss Genetic Disease with Your Loved Ones” Global Genes sponsors an online event on April 1st at 11am PT/ 2PM ET. No fooling – don’t miss this webinar! Email your questions prior to the event, and learn more about genetics and rare disease diagnoses. FMI and to register your participation, see http://globalgenes.org/april2015webinar/…Continue
Added by Linda Burke on March 16, 2015 at 2:00pm — No Comments
Our friends in Spain have been busy raising awareness for aHUS! That not only helps those in Spain with aHUS but it helps all of us. We are a global family and need to support each other.
They have been taking plenty of pictures of those supporting aHUS awareness wearing wristbands promoting their aHUS website (remember our Australian friends holding up #saveaHUSlives signs?). Here are some of pictures of the…
Added by Jeff Schmidt on March 8, 2015 at 3:30pm — No Comments
The 2015 aHUS regional meetings, hosted by NORD and Global Genes, are events designed to help you learn about aHUS from medical experts, to connect with other families who are challenged by aHUS, and to explore options and resources available to patients and their families.
Are you a newly diagnosed aHUS patient? Have you spent years being challenged by aHUS issues or are a caregiver with ongoing concerns about how to optimize aHUS treatment for your loved one? Feeling…Continue
Added by Linda Burke on March 4, 2015 at 9:00pm — No Comments