Welcome to the members area! If this is your first visit, we hope you'll register for an account and introduce yourself to the group. We have many, many warm and welcoming members in our group. If you have PNH or know someone who does, this group is a wonderful
source of information.
One of the great things about our members is that they are well informed about the disease and can either answer questions you have or put you in
touch with experts who will be able to help.
Our group was founded by Rebecca Gaskin in 1999. When she was diagnosed with paroxysmal nocturnal hemoglobinuria in 1997, she found little information available for patients, so she set about researching the disease. She contacted the experts in the field and read everything she could find. In 1999, she started a Yahoo Groups site so that she and the few others she had found with PNH could keep in touch, support each other, and share information. Others found the group, and it has grown to a new website with over 400 members.
Rebecca passed away in July 2003 from complications of PNH. We miss her terribly, but this group is her legacy, and we are here to continue her work. We hope you will feel welcomed here, and that we can give you the support and information you need to cope with PNH.