Global Genes and The Foundation for Children with atypical HUS joined together in Houston for a program of information and insight on October 25-26th in support of aHUS patients and their families. A welcome reception and dinner on Friday night allowed opportunities to meet others affected by atypical HUS, and we were all inspired by keynote speaker Linda Loftus. As parent of a son with aHUS, Linda’s passion about family advocacy issues touched a…Continue
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Do you have specific questions for aHUS 'physician expert' Dr. Larry Greenbaum but are unable to attend the Oct. 25-26th Meetup in Houston? There's an exciting new opportunity for your voice to be heard...send your questions to Carrieo@rareproject.org for inclusion in Dr. Greenbaum's Question and Answer segment. Rare disease advocacy group Global Genes | R.A.R.E. Project will host the Houtson meeting and videotape Dr. Greenbaum's…
After just reading a blog on Lotsa Helping Hands regarding this topic, I realised this is something we haven't addressed directly. I would like to get together a hand out for people to use, because, let's face it, when your world is turned upside down by illness, this question comes when you are least able to know or articulate how family and friends can help. If you have things here I haven't mentioned, please let me know so it…Continue
It's so exciting to have Global Genes host an outstanding program of aHUS education, networking and support on October 25th and 26th.....and I'll be there!
A huge draw for me was the opportunity to hear Dr. Larry Greenbaum speak about aHUS diagnosis, treatment, and issues regarding this complex rare disease. Some of you may recall that Dr. Greenbaum has been the Talbot's physician…Continue
Added by Linda Burke on October 5, 2013 at 12:30am — No Comments
Hello everyone, as you can see from our events page, we have a few regional meetings coming up. The nearest ones are Houston and Chicago. If you've been fortunate enough to have attended one of these meetings or the meetings in Iowa, you know what an enormous benefit you receive from attending. It is really a pretty rare event to meet with experts of Ultra Rare diseases, I encourage you to try and attend or send a family representative to attend one of these meetings. You'll be able to…Continue
My hemoglobin has been going up and down since I've had aHUS. Whenever my hemoglobin was below a 10, I would receive an Aranesp shot. However, I got a letter recently from my insurance company stating that the Aranesp is not medically necessary for me to have because two weeks ago my hemoglobin was a 11.6. Today it went down to a 10.7. Not low enough to get the shot, but back going downward. I was told my doctors would have to contest that decision and give them a reason why I still require…Continue