Today I spoke to the representative to get W started in the Severe Chronic Neutropenia International Registry today--an organization that monitors clinical course, treatment, and disease outcomes in patients with severe chronic neutropenia. As a gift, this registry provides Neupogen to participants for free! Once he's set up in this registry, we'll then get him involved in the Shwachman Diamond Syndrome Registry, too.
I'm very excited to have his medical records be sent in for research in regards to treatment options. And of course, excited to have his Neupogen be provided for us--what a blessing!
Our son just got confirmation that he'll be on the neutropenia registry. I didn't realize it, but you have to be confirmed onto that registry--I don't think it's the same way with the SDS registry. Is this the one out of Seattle?
ReplyDeleteGood luck--the paperwork for both is extensive, and even though our official forms are in, I still have family history to send in... Ugh! :)