Past Events

Location: Vancouver, Canada

MULTIPLE SCLEROSIS AND NEUROMYELITIS OPTICA: THE STATE OF THE ART [3.5 CME] Date: Wednesday, February 9th Time: 7:30 a.m. – 11 a.m.

Featuring Dean Wingerchuk, M.D., from the Mayo Clinic 7:45 a.m. – 8:45 a.m. Neuromyelitis Optica: Diagnosis and Treatment

Because of early and frequent involvement of the optic nerve in multiple sclerosis (MS) and neuromyelitis optica (NMO), neuro-ophthalmologists are often part of the early identification and decision-making process of both disorders. This symposium will review recent advances in the diagnosis and management of MS and NMO, focusing on practical considerations. Speakers will address the diagnosis of MS versus NMO, recognition of patients at high risk for progression, initial treatment options, and criteria for determining whether a given disease-modifying therapy is sufficiently effective. At the conclusion of this symposium, the attendees should be able to: 1) Apply formal criteria to distinguish between a clinically-isolated syndrome like optic neuritis, MS and NMO; 2) Recognize patient populations at increased risk for the future development of MS or recurrent NMO; 3) Identify current and emerging treatment options for both conditions; and 4) Define “treatment failure” in MS.

Click here to download the program (462 KB).

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 28, 2011. Learn more about the History of Rare Disease Day, Past Successes or the Goals and Plans for this year.

Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way. This website focuses on Rare Disease Day activities in the U.S. To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org.

On February 28, 2011, the National Institutes of Health (NIH) will celebrate the 4th annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, the NIH Institutes and Centers, the Health Resources and Services Administration (HRSA), the Food & Drug Administration’s Office of Orphan Product Development (OOPD), the National Organization for Rare Disorders (NORD), and the Genetic Alliance. Rare Disease Day at NIH (RDD@NIH) will be held in the Lipsett Amphitheater from 8:30AM to 5:15PM. In addition to the various scheduled talks, we expect to have posters and exhibits from many groups relevant to the rare diseases research community. Attendance is free and open to the public. In association with the Global Genes Project, we encourage all attendees to wear their favorite pair of jeans.

Visit the NIH website to learn how to attend, register and view the tentative agenda.

What is a Rare Disease?

In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2011, our focus is on disparities in access to services and treatment.

To raise awareness of rare diseases and the need for safe, effective treatments, people around the world joined together to observe the 2nd Annual Rare Disease Day on the last day of February (Feb. 28, 2009). NORD coordinated this project in the U.S., and invited all patient organizations, caregivers, researchers, and companies developing orphan products to join in this observance. The purpose was to focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.

The 1st Rare Disease Day was organized in Europe last year by EURORDIS, the European Rare Disease Organization. It was very successful, with many political leaders and members of royal families helping to draw attention to the activities. This year is the first time for Rare Disease Day to be observed in the U.S. The hope is that this will become an annual global event on the last day of February.

Click here to find out more about Rare Disease Day 2010.

Visit the new US website.

Watch Live Webcast

Dr. Benjamin Greenberg from the University of Texas Southwestern will present “The Unknown Unknowns of Biorepositories: Overcoming Obstacles.”

Visit the NIH website for more details.

Friday, September 24 – Sunday, September 26, 2010 Hosted by the University of Texas Southwestern

The 2010 Rare Neuroimmunologic Disorders Symposium is being hosted in Dallas, Texas for the first time. Over the last 10 years, symposia have been held in Baltimore, Albuquerque, Los Angeles and Seattle, bringing together patients, families, clinicians and scientists with interests in rare immune mediated disorders that affect the nervous system.

Click here to find out more about the 2010 Rare Neuroimmunologic Disorders Symposium.

Beverly Hilton Hotel, Beverly Hills, CA Ms. Victoria Jackson and Ali Guthy will be honored as Champions of Couarge and Hope for the Sixth Annual Evening of Champions Awards Dinner benefiting CoachArt.

Visit the CoachArt website for more details.

An educational event presented in partnership with GJCF and the California Institute for Regenerative Medicine.

UCLA, Covel Commons, Grand Horizon Room, 3rd Floor

Speakers include: Sherry Lansing ICOC Governing Board Member

Victoria Jackson Founder, Guthy-Jackson Charitable Foundation Patient Advocate for NMO

Michael Yeaman, PhD Professor of Medicine, Division of Infectious Diseases, UCLA Benjamin Greenberg, M.D., MHSc Director, Neuromyelitis Optica Program University of Texas, Southwestern Medical School

Candace Coffee Patient Advocate for NMO

Visit the CIRM website for more details.

Victory Junction Gang Camp, October 8-10, 2010

TMA Retreat Weekend at Victory Junction Gang Camp, October 8-10, 2010 (near Greensboro, NC). Application process begins June 15, 2010. For older teens and young adults with TM, ADEM, NMO, ON. Parents are also welcome to attend. Please get in touch with Sandy or Paula Siegel, if you are interested in going. If you are a camper at heart, have TM, ADEM, NMO or ON but are older than a young adult and would like to be a volunteer at camp, please get in touch with one of the TMA officers for instructions about the volunteer process.

Click here to find out more about the TMA Retreat Weekend.