Foundation Research Grant Announcement
Sunday, July 8th, 2012
A one-year Tarlov cyst research grant has been funded by the Tarlov Cyst Disease Foundation. The one year grant has been implemented for the Foundation by NORD (National Organization for Rare Disorders).
The grant recipients are:
Principal Investigator: Kieran Murphy, MB, BCh, FRCPC, FSIR
Professor & Vice Chair, Medical Imaging
Deputy Chief, Medical Imaging, University Health Network,Mt Sinai Womens’ Hospital
Director, International Medical affairs, University Health Network, Toronto Western Hospital
University of Toronto, Ontario, Canada<
Co-Investigators:
Chantal Morel, MD, FRCPC, FCCMG
Clinical and Metabolic Geneticist
Assistant Professor
University Health Network/ Mount Sinai Hospital
Toronto, Ontario, Canada
Jordan Lerner-Ellis, PhD, FACMG
Director, Laboratory for Advanced Molecular Diagnostics, Mount Sinai Hospital
Assistant Professor, University of Toronto
Department of Laboratory Medicine and Pathobiology
Toronto, Ontario, Canada
Aaron Goldman, PhD
Director, Research Project Portfolio
Clinical Genomics Center — Gene Profiling Facility
Samuel Lunenfeld Research Institute
Mount Sinai Hospital
Toronto, Ontario, Canada
Josh Silver, MSc, CGC, CCGC
Certified Genetic Counselor
Fred A. Litwin Family Centre in Genetic Medicine
University Health Network / Mount Sinai Hospital
Toronto, Ontario, Canada
The Grant Focus is: Genetic Analysis of Patients with Tarlov Cyst Disease.
NORD (National Organization for Rare Disorders) Advocacy Alert Response to Supreme Court Decision 6/28/12
During the two-year debate on healthcare reform that led to the Affordable Care Act, NORD fought long and hard on behalf of rare disease patients and patient organizations for the following insurance reforms, which we considered essential:
- elimination of discrimination based on pre-existing medical conditions
- elimination of annual and lifetime insurance caps
- elimination of the ability of insurers to discontinue coverage for people who received dire diagnoses
- a public health insurance option to ensure that everyone could afford coverage
These key issues were all addressed in the Affordable Care Act. At this time, NORD will remain focused on assuring that these critically needed insurance reforms are fully implemented to help Americans affected by rare diseases access desperately needed medical care.