|
NORD Events
Upcoming Events From NORD Member Organizations
NORD’s member organizations are invited to post information on this page about
their upcoming events. Questions about events listed below should be directed
to the organization sponsoring the event.
NORD member organizations can submit copy for this page to
webmaster@rarediseases.org.
All entries should be submitted in the following format:
SAMPLE Member Organization Event Listing:
Acid Maltase Deficiency Association
The Acid Maltase Deficiency Association and the International Pompe Association are
sponsoring a Patient Conference to raise awareness of Pompe disease and provide patients
and their families with current information that will impact their lives.
When: November 17-19, 2008
Where: Holiday Inn Riverwalk, San Antonio, Texas
Reservations: (888) 465-4329
Information: www.amda-pompe.org/2008Conference.htm
--------------------------------
National Cushing's Patient Education Day
February 28, 2009
The Cushing's Support and Research Foundation is pleased to announce that it will hold it's inaugural
National Cushing's Patient Education Day in Boston on February 28, 2009. Throughout the day expert physicians
and nurses will give presentations on topics ranging from the function of the pituitary gland to the diagnosis
and, finally, the treatment of Cushing's. Along the way patients and their families will have the opportunity to
ask experts questions about this rare disorder and to share their experience with other patients. For many attendees,
this may be their first opportunity to meet another person who has struggled with this complex affliction. After
the event, patients will have a deeper understanding of the effects of excess cortisol on their bodies and minds
and will have made valuable connections that will enhance their treatment and quality of life.
The Cushing's Support and Research Foundation (CSRF) is dedicated to providing information and support to
Cushing's patients and their families. The Foundation was incorporated in the state of Massachusetts as a
non-profit organization and is an Associate Member of NORD, the National Organization for Rare Disorders.
The CSRF has a Medical Advisory Board consisting of very experienced surgeons and endocrinologists who are
world renowned for their expertise on Cushing's. The CSRF maintains a database of many present and past
Cushing's patients willing to support others. The CSRF is primarily funded by membership and personal
donations. The Patient Education Day will be free of charge.
National Ataxia Foundation
The National Ataxia Foundation with the Seattle Ataxia Support Group and the
Ataxia Society of Vancouver, Canada invite you to attend the 52nd
Annual Membership Meeting to provide patients and their families with current
information on research and medical breakthroughs taking place in all the forms
of ataxia, hereditary and sporadic.
When: March 20-22, 2009
Where: Doubletree Hotel-Seattle Airport, Seattle, Washington
Reservations: (763) 553-0020
www.ataxia.org
Shwachman Diamond Syndrome
A scientific congress will be held about Shwachman Diamond
Syndrome covering topics such as genetics & phenotypic variation, SDS modeling and function, hematology and
leukemia, gastrointestinal issues, bone metabolism & dysplasia and neurodevelopment.
When: June 19, 20, 2009
Where: Amsterdam, Holland.
Registration can be taken at www.shwachmancongress.info
Contact: shwachman@amc.nl
For questions on this submission, please contact Blair Van Brunt.
For questions about the Congress, please contact shwachman@amc.nl
|
Check here to read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
