This website is just one of the resources created by the NNN. We have two main goals. First, we coordinate efforts on a national scale to promote awareness and education of Neutropenia. As you may know, diagnosing Neutropenia can be difficult and many other conditions will probably be considered. Plus, since Neutropenia is so rare, even physicians may not be aware of it. We are certain there are other patients, families and physicians who are unaware they may be dealing with Neutropenia. So, we hope to raise the awareness of the existence of Neutropenia. Raised awareness will help current and future patients find the support and treatments they need as well as increase the motivations for research towards improved understanding and treatments.
Second, we’re striving to develop a support system for individuals and families affected by Neutropenia. Dealing with this condition can be confusing, frustrating and even lonely. And while we are a small community we are a close-nit community eager to connect with others and give them any support we can.
Severe Chronic Neutropenia International Registry
The SCNIR is another organization not directly affiliated with the NNN. The SCNIR website also has valuable in formation. However, it is important for patients and families to register with both organizations, as they do not share registration information with each other.
Registering with SCNIR will determine if a patient is eligible to be included in a research program that could potential offer help with the cost and supply of G-CSF, the most common treatment for SCN. We strongly encourage all SCN patients to register with the SCNIR.
The mission of the Severe Chronic Neutropenia International Registry’s (SCNIR) is to establish a global database of treatment and disease-related outcomes for those diagnosed with SCN. Collection of this information will lead to improved medical care and is used for research to determine the causes of Neutropenia. The SCNIR was established in 1994 to monitor the clinical course, treatment, and disease outcomes in patients with severe chronic Neutropenia (SCN). The Registry has the largest collection of long-term data on patients with this condition in the world. Participation in the Registry benefits patients, their families and the physicians who treat them by providing the most up to date information to them on the natural history of SCN and its treatment options.
International Neutropenia Organizations
SCNIR Medical Park Hannover
Phone: 49 511/557105
Fax: 49 511/557/106
In the UK:
Severe Chronic Neutropenia UK Registry
Department of Paediatric Haematology and Oncology
St James’s University Hospital
Phone: +44 (113) 206-5939
Fax: +44 (113) 247-0248
Arlene Ewan, Data Manager
University of Ballarat, Cancer Research Centre
St. John of God Hospital
1002 Mair ST
Ballarat, Victoria Australia, 3350