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NORD Honorees
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
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CMTC Organization The mission of the CMTC Organization is to increase the well-being of people who suffer from Cutis
Marmorata Telangiectasia Congenita (CMTC), and to stimulate scientific research regarding the causes and treatment of CMTC. Meetings are scheduled as follows:
When: Washington, DC on July 18, 2009.
The Netherlands on October 31, 2009.
Contact: Lex van der Heijden president@cmtc.nl
Information: http://www.cmtc.nl/HTML/news.php
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
AMYLOIDOSIS SUPPORT GROUPS A wonderful group of motorcyclists from Nassau County, New York will have a fund raising day in August for Amyloidosis. They work with ASG and have raised over $30,000. www.popsrun.org
Last year www.bobkingmemorial.com held a golf event and raised almost $15,000 for Mayo Amyloidosis Research and their goal is $20,000 this year.
For questions on this submission, please contact Muriel Finkel, Toll Free 866-404-7539
National Ataxia Foundation The National Ataxia Foundation's Annual Membership Meeting provides
opportunities for those with both hereditary and sporadic ataxia to meet others who are affected by this movement
disorder and hear presentations from world leading ataxia researchers and clinicians.
When: March 12-14, 2010
Where: Chicago Regency O'Hare Hotel, Chicago, Illinois
For more information: 763-553-0020
Information: http://www.ataxia.org/pdf/2010_AMM_Announcement.pdf
Immune Deficiency Foundation IDF 2009 National Conference
When: June 18-20, 2009
Where: Disney's Contemporary Resort
Information: http://www.primaryimmune.org
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