Neutropenia Support Association Inc.

	Increasing the understanding of neutropenia by providing information and support for care givers, patients and their families.

Special Announcement:

2009 Marrow Failure and
Myelodysplasia Conference

Saturday March 28, 2009 - from 9 a.m. to 4:30 p.m.

The Hospital for Sick Children
Hollywod Theatre, Elm Wing, 1st Floor
555 University Avenue., Toronto, ON

We are pleased to invite you to a day-long, interactive health-care meeting about bone marrow failure. This meeting is for patients with bone marrow failure disorders and myelodysplastic syndromes, patients’ families, as well as for health- care workers and others who are interested in learning more about bone marrow failure and contributing to this exciting event.

Download the 2009 Conference Brochure (PDF)
Download the 2009 Conference Flyer (PDF)
Download the 2009 Conference Agenda (PDF)

For more details and to RSVP contact Philippa McCaffrey, Marrow Failure and Myelodysplasia Program, The Hospital for Sick Children, Toronto at 416-813-8886 or by email at philippa.mccaffrey@sickkids.ca

Welcome
The Neutropenia Support Assoc. Inc. is a volunteer driven registered charity, that was formed in 1989 to increase awareness and understanding of neutropenia.

Neutropenia is a blood disorder you don't often hear about, but it can affect anyone. Some people are born with it. It can happen after a viral infection, or can be drug induced. Some offending agents include some antibiotics, antithyroid agents, tranquilizers, anti-inflammatory agents, antirheumatics, sedatives etc. Exposure to certain poisons can also cause Neutropenia.

Neutropenia affects as many as one in three patients receiving chemotherapy for cancer. It is also associated with many other diseases like Lupus (SLE), Malaria, Hepatitis viruses, Barth Syndrome, Rheumatoid Arthritis, Sjogren's Syndrome, Shwachman-Diamond Syndrome, Aplastic Anemia and Myelodysplastic Syndromes, Parvovirus, Felty's Syndrome, to name just a few.

Neutropenia can be a serious problem requiring prompt attention. Without proper medical care, patients may find it hard to lead normal lives. Severe cases can be life threatening.

Other rare diseases like Shwachman-Diamond Syndrome, Fanconi Anemia, and Kostmann's Syndrome (a congenital neutropenia) can evolve to leukemia and require a bone marrow transplant. The development of treatments and the study of other diseases like AML leukemia, have led to involvement with many organizations which share similar issues.

Some of the groups we are voluntarily working with right now are the Canadian Cancer Advocacy Network, The Canadian Blood Services National Liaison Committee, and the Technical Committee on Blood and Blood Components CSA. Other areas ofinterest are drug strategies and guidelines, drug approval, long term drug safety surveillance, bone marrow transplantation and genetics studies.

The Neutropenia Support Assoc. is also a passionate advocate for patients with chronic illness with regard to access issues, patient's needs, patient's protection, and patient's rights. The association has many articles on neutropenia and it's treatment. We maintain an information library to answer questions from patients, their families, and the medical community. We also raise seed money for research.

For more information please write or call:

Neutropenia Support Assoc. Inc.
P.O. Box 243, 971 Corydon Ave.
Winnipeg, MB, Canada R3M 3S7
Toll Free (Canada & U.S.)1-800-6 NEUTRO

or contact Lorna Stevens
President and Co-Founder NSAI
stevensl@neutropenia.ca
Pager: 1-204-989-5000.

Charitable Registration #: 0848093-11


	U.S. Announcment The National Neutropenia Network (NNN) and the SCNIR are planning another conference in the United States July 24th-26th 2009. For more details visit their website The Neutropenia Support Association Inc. ( founded 1989) is independent of the NNN and the SCNIR. Canadian physicians; Dr's Bonnie Cham and Melvin Freedman initiated the Canadian registry in 1994. Dr. Yigal Dror currently sits on the SCNIR Board. The Neutropenia Support Assoc. Inc. is greatly indebted to Dr. Laurence Boxer, Ann Arbor Michigan and Dr. David C. Dale, Seattle Washington and other of the SCNIR. A number of Canadian families participated in the G-CSF trials in the late 1980's when so little was really known about neutropenia. The current knowledge of severe congenital neutropenia (SCN) and multifaceted syndromes accompanied by neutropenia has been detailed in many published articles in major medical journals. New information continues to literally explode in the community each and every year..... the latest gene reported ASH 2008. The SCNIR ASH presentations and abstracts have helped educate Internationally thousands of hematologists and motivate young researchers. Those treating SCN's have Internationally saved or helped SCN's live so much longer. Providing they have access to treatment, gone are the days a child would not make it to the age of 3. I have personally met or spoken to literally thousands of Internationally truly thankful families and individuals. Do Your Research NCI Study Launched on Rare Inherited Bone Marrow Failure Disorders and Cancer Risk Real Life Story Jamie Benzelock Update Patrick's Update - Fall 2003



	This site has been developed by assembling many articles about Neutropenia and organizing them into different categories to assist you in learning more about this disease. We have voluntarily distributed many of these articles through the mail to caregivers, patients and their families. This site allows us to bring this information to anyone connected to the world wide web. It is a work in progress and some areas are still under development. We are sorry for this inconvenience