Follow one topic of conversation at a time
How many children take Eculizumab in Spain??View: Translations (EN) Original language
Mireya | Meetings | about 1 month ago | Originally written in English How many children take Eculizumab in Spain??
For aHUS, I only know the parents of the Fundación Americana and the ones that have been added recently on this site.
What can we do to have a larger community and get to know each other? It's very difficult for a mother not to be able to speak of this sickness to somebody close by. I consider my family the one that is on the other side of the ocean and they have prayed so much for Jose. I wish we could get together in some congress. Thank you Fundación Americana.
We are united in our desire to share information and our stories about dealing with this rare disease, regardless of geographic or language barriers. I would love to see a global aHUS registry, and to coordinate patient/family surveys across national boundaries.
Perhaps 'live-streaming' portions of Dr. Goodship's UK conference (and the American's Iowa conference) would help, since podcasts are available to other organizations. The funding and tech support would be key issues here, but that might be a potential avenue of exploration.
I admire your drive for knowledge and your loving, strong advocacy for Jose!