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

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