Advocacy Spotlight: Tarlov Cyst Disease Foundation
Wednesday, May 11th, 2016
Ruth J Hickman, MD Published Online: Wednesday, May 11, 2016 The Tarlov Cyst Disease Foundation is the only foundation in the world solely dedicated to the cause of Tarlov cysts. Through promoting research, supporting families, and providing education, the foundation looks toward a future in which the disease is easily diagnosed and treated. About Tarlov […]
Read More »Rare Disease Day®
Monday, February 29th, 2016
Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Learn more about the history of Rare Disease Day. The 2016 global theme, “Patient Voice,” recognizes the […]
Read More »Rare Disease Report Article Link:Dr. Jim Radke
Wednesday, September 30th, 2015
http://www.raredr.com/news/professorship-tarlov-cyst-disease
Read More »NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act
Tuesday, September 29th, 2015
Washington, D.C. September 29, 2015 The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on yesterday’s approval of the Ensuring Access to Clinical Trials Act (S. 139) in the United States House of Representatives. The House of Representatives echoed the U.S. Senate and showed […]
Read More »Johns Hopkins & State of MD Tarlov Cyst Research & Education Press Releases
Thursday, September 10th, 2015
Six new research professorships have been endowed with $14.9 million in private donations and state funding, the Maryland Department of Business and Economic Development (DBED) announced Wednesday. The state funds were committed through the Maryland E-Nnovation Initiative, which matches private donations to universities for basic and applied research in scientific and technical fields. The University […]
Read More »Johns Hopkins University Press Releases
Thursday, September 10th, 2015
Two Johns Hopkins research professorships endowed by donations, state funding State funds for endowed professorships in water and public health, genetic medicine provided through Maryland E-Nnovation Initiative
Read More »Hub Staff Report
Thursday, September 10th, 2015
A new professorship in water and public health and one focused on genetic medicine have been established at Johns Hopkins University with a combination of private donations and state funding through the Maryland E-Nnovation Initiative. The two professorships, announced today, are among the first six positions at Maryland universities supported by $14.9 million in funding […]
Read More »Rare Disease Day 2015
Saturday, February 28th, 2015
Rare Disease Day is February 28, 2015. The National Organization for Rare Disorders (NORD) is sponsoring this day of awareness throughout the United States. EUORDIS (The European Organization for Rare Disorders is sponsoring this day of increased rare diseases awareness throughout Europe, as are many other countries around the world. Checkk the Rare Disease Day […]
Read More »NORD Issues Statement on Departure of FDA Commissioner Margaret Hamburg
Wednesday, February 11th, 2015
WASHINGTON, D.C.—February 11, 2015 The following statement was issued today by Peter L. Saltonstall, President and CEO of NORD, following the announcement by FDA Commissioner Margaret Hamburg, M.D., that she will leave her job at the end of March: Dr. Hamburg has been an ardent and sincere supporter of the rare disease community and orphan […]
Read More »HAPPY NEW YEAR 2015! Ring in the new year with new health coverage!
Thursday, January 1st, 2015
Sign up by Jan. 15 for coverage that starts Feb. 1 → http://click.mail.whitehouse.gov/?qs=55c88acc45b2f5119cac32a29344d761cbdbc1e2e7ce9a20ecce5b6389210499188832668fa8c671 Make a New Year Resolution! Make a difference in 2015 by joining us as a member and/or making a donation to support the Foundation’s efforts for Tarlov cyst patients around the world!THANK YOU!
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