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

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

Association for Glycogen Storage Disease
The Association for Glycogen Storage Disease [AGSD] will hold its 32nd annual Patient/Family/Professional Conference in Orlando, Florida. Our goals are to raise awareness of the glycogen storage diseases, to provide support to patients and their families, and to present current information on medical treatments and research in GSD.

When: October 8-9, 2010
Where: Radisson Resort Orlando-Celebration, Orlando, Florida
Reservations: (800)333-3333 or (407)396-7000
Information: www.2010conference.agsdus.org/

Histiocyte Society
The Annual Meeting of the Histiocyte Society serves as the main forum for many of the world's most accomplished histiocytosis researchers and medical professionals to engage in vital collaboration and dialogue with one another. This year, the Society's 26th Annual Meeting will feature presentations by several experienced researchers regarding a variety of perspectives on the study and treatment of the histiocytic disorders. The subjects of these presentations include understanding the pathogenesis of Langerhans cell histiocytosis (LCH), confusing and/or provocative histiocytosis scenarios from the pathology perspective, and a review of the history of the study and treatment of LCH.

Because the Society seeks to encourage physicians and researchers from around the world to take part in its activities, its Annual Meetings feature oral and poster presentations of abstracts summarizing ongoing research. In addition, several Society members will present updates on ongoing Society-sponsored clinical trials on the histiocytic disorders. The Histiocyte Society is excited to inform you about this year's Annual Meeting and is pleased to invite medical professionals and researchers who study and treat the histiocytic disorders to attend.

When: October 18 - 20, 2010
Where: Boston, Massachusetts
Information: www.hsboston2010.org

The International Rett Syndrome Foundation
The International Rett Syndrome Foundation (IRSF) has announced that Stephen E. Bajardi has joined the foundation as Executive Director. Mr. Bajardi has an extensive background at the executive level in the non-profit world and currently serves on NORD's Board of Directors. The IRSF has also announced awards of two million dollars in grant money to support eighteen research projects. These new awards will focus on several avenues of research including development of neuronal assays for drug screening derived from human-induced pluripotent stem cells (iPSCs), development of therapeutics to treat or reverse Rett syndrome and the identification of drug targets that may be lead to new therapeutic interventions. Two new funding opportunities will be announced shortly that focus on translational research. For more information visit: http://www.rettsyndrome.org/

Life Raft Group
The Life Raft Group provides support, through information, education, and innovative research to patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor). The organization's Life Fest 2010 has just been announced.

When: June 25-27, 2010
Where: Hyatt Regency Jersey City on the Hudson.
Information: Additional information will be available soon on The Life Raft Group web site: http://www.liferaftgroup.org/about.html

The Myocarditis Foundation
The Myocarditis Foundation has announced the award of three research fellowship grants for 2010-11. David Marchant, Ph.D. from the University of British Columbia is doing research that could lead to both a new diagnostic technique and potential novel therapy to treat myocarditis. Silvio Antoniak, Ph.D. from University of North Carolina at Chapel Hill is studying how viral myocarditis progresses to heart muscle failure. Dr. Byung Kwan Lim of the University of California San Diego is doing research that focuses on the relationship between Coxsackie virus and viral myocarditis. More information.

The Organic Acidemia Association
and the FOD Family Support Group are hosting our 2010 FOD/OAA Metabolic Family Conference to provide patients and their families with current information that will impact their lives. Professionals are welcome to attend.

When: July 30 and 31, 2010
Where: Emory Conference Center Hotel, Atlanta, GA
For more information: 763-553-0020
Reservations: 1-800-933-6679
Information and Registration forms: www.fodsupport.org

Trigeminal Neuralgia Association-The Facial Pain Association
TNA-The Facial Pain Association has announced their 20th Anniversary National Conference. This conference provides an opportunity for patients, caregivers and healthcare providers to develop an understanding of face pain resulting from trigeminal neuralgia and other neuropathic facial pain conditions and to learn about current practices for diagnosis and treatment.

When: August 28-29, 2010
Where: Mayo Clinic, Rochester, MN
Information: http://www.fpa-support.org/events/national_2010.php

Vasculitis Foundation
The 2010 International All Star Vasculitis Symposium will be held in California. The biennial symposium is the largest meeting of vasculitis patients, family members and medical vasculitis experts in the world. Topics will cover all the vasculitides and will concentrate on advances in medical treatments, research, and quality of life issues for patients. Newly diagnosed patients will find hope and receive encouragement that they will get better; experienced patients will find the most up-to-date information on treatments and staying in remission.

When: July 30 - August 1, 2010
Where: The Westin Hotel Long Beach, California
Information: https://www.vasculitisfoundation.org/2010vasculitis-symposium