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

Aplastic Anemia & MDS International Foundation
The 2010 Patient and Family Conference will bring hundreds of patients and their families together with a selection of the world's most distinguished medical researchers in bone marrow failure disease. Attendees will have the opportunity to hear directly from these experts about the latest in medical research, clinical trails, and treatment options. In addition to hearing medical presentations, attendees have the opportunity to meet other patients and families in specially designed workshops allowing everyone the opportunity to connect with one another and share, not only knowledge, but concerns and questions.

When: July 10-13, 2010
Where: Hyatt Regency in Bethesda, MD
Information: http://www.aamds.org (Beginning April 1, 2010)

Amyloidosis Support Groups
The Amyloidosis Support Groups are convening a support meeting in the Chicago area for individuals with familial amyloidosis, family members and caregivers. The agenda is under development and will include presentations from familial amyloidosis experts from the Mayo Clinic Boston and IUPUI as well as some clinical trial investigators. Transportation from O’Hare Airport will be provided.

When: October 31-November 1, 2009
Where: Wood Dale, IL (Western Chicago Suburb)
Information: http://www.amyloidosissupport.com/familial.html
RSVP: Muriel Finkel: muriel@finkelsupply.com

Amyloidosis Support Groups
The Amyloidosis Support Groups have announced the second Living with a Blood Disease Symposium: A Comprehensive Workshop for Patients, Family and Friends. This meeting is for patients and family members who have experienced a blood disease and either have been cured or are being treated. The goals of the conference are to provide the latest medical information about blood diseases and to discuss shared issued and unmet needs of patients.

When: May 8-9, 2010
Where: Mayo Clinic, Rochester, MN,
Information: http://www.mayoclinic.org/blood-patient-workshop/index.html

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

Hydrocephalus Association
The Hydrocephalus Association has scheduled "Ask the Doctor", a hydrocephalus community support group meeting. Michael A. Williams, M.D., Medical Director, Berman Brain & Spine Institute and Director, Adult Hydrocephalus Center, Department of Neurology, Sinai Hospital of Baltimore will be available to answer questions.

When: February 13, 2010 11:00 am-12:15 pm
Where: BSI Executive Conference Room

3rd Floor, Mirowski Medical Office Building, Sinai campus
5051 Greenspring Ave., Baltimore, MD

Information: Tiana Rogers 410-601-1900 by February 8, 2010

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.

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

National Tay-Sachs & Allied Diseases Association
On November 4, 2009, The NTSAD will be hosting their 2nd Annual Coming Together in Boston: An Evening to Benefit NTSAD. Proceeds will benefit the programs and services that help families and individuals and drive research. RSVP by October 30 to diana@ntsad.org or visit http://www.ntsad.org for more information or to purchase tickets.

Prader-Willi Syndrome Association (USA)
The International Prader-Willi Syndrome Organization and the Taiwan Rare Disease Foundation have announced the 7th international conference for scientists, professionals, providers, caregivers, parents and persons with PWS. The theme of the conference is East Meets West: A New World for Prader-Will Syndrome and the agenda will include presentations by international experts about medical treatments; tools and skills for environmental and behavioral intervention; and the range of professional supports and services that are required for successful care and management of individuals with PWS.

When: May 21-23, 2010
Where: Tapei, Taiwan
Information: http://www.pwsausa.org/conference/FIRSTANNOUNCEMENTANDEXPRESSIONOFINTEREST.pdf

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