Cohen Syndrome Families,
For the past several years the Severe Chronic Neutropenia International Registry has been following several of our Cohen Syndrome families. During the 2014 Cohen Syndrome family gathering more families joined the registry. We cannot express how important it is for all of our families to participate in this study and we urge you to contact Audrey Anna Boy B.S from the Severe Chronic Neutropenia International Registry at the contact information below.
This request is for all Cohen Syndrome cases, even if there are no symptoms of Neutropenia as many of our kids so not exhibit clinical symptoms.
A message from Audrey Anna:
That means if they are neutropenic or not, it does not matter. For folks not neutropenic they would not need to do anything special, no bone marrows or extra blood work. It would be letting us know about medical history and then allowing us to follow the medical records. This way we can really get an idea of who getsneutropenic and why.
Please let the families know that in the US we are anxious to hear from them. We will become the Cohen medical database specific to bone marrow health if families want to join us in this goal.
Audrey Anna Bolyard, R.N., B.S.
Severe Chronic Neutropenia International Registry
University District Building
1107 NE 45th Street, Suite 345
Seattle, WA 98105