Latest European Organization for Rare Diseases Stories

Snappin' Ministries, Inc. serves as official Rare Disease Day Partner. Oconomowoc, WI (PRWEB) February 28, 2013 Working with parents in raising a child with special needs requires an organization to have a broad knowledge of a variety of diagnoses, many of them are rare. This is one reason why Snappin' Ministries, a non-profit organization committed to supporting parents of children with special needs, based at Oconomowoc, Wisconsin, is pleased to serve each year as a Rare...

Collaborative donations of computing cycles to enable more in-depth research; goal is speeding discovery of small molecules for use in new medicines and vaccines EXTON, Pa., Feb. 28, 2013 /PRNewswire/ -- A new effort, being introduced today, aims to make it possible for medical researchers to develop small molecules that can be used to prevent, treat and find cures for a wide range of debilitating diseases by enlisting the help of volunteers around the world and using their idle...

HACKENSACK, N.J., Feb. 28, 2013 /PRNewswire-USNewswire/ -- Parent Project Muscular Dystrophy (PPMD), the leading non-profit in the United States focused entirely on Duchenne muscular dystrophy (Duchenne), will mark the six year anniversary of Rare Disease Day today by participating in two important events that will raise awareness about Duchenne and share with audiences compelling stories from our community. (Logo: http://photos.prnewswire.com/prnh/20100119/DC39975LOGO) PPMD...

LEXINGTON, Massachusetts, February 28, 2013 /PRNewswire/ -- - Global Initiatives Underscore Company's Long-Term Commitment to the Rare Disease Community Shire plc (LSE: SHP, NASDAQ: SHPG) today announced its support of Rare Disease Day, joining patients, healthcare providers, and patient organizations around the world to support a day that focuses attention on rare diseases as a public health issue, and highlights the need for more understanding and awareness about...

Japan Patients Association (JPA) and National Organization for Rare Disorders (NORD) to Collaborate Toward New Treatments and Improved Policies WASHINGTON, Jan. 29, 2013 /PRNewswire-USNewswire/ -- The Japan Patients Association (JPA) and the National Organization for Rare Disorders (NORD)--the primary organizations representing patients and families affected by rare diseases in Japan and the U.S.--announced today that they have signed a memorandum of understanding to collaborate and...

DIA and the National Organization for Rare Disorders (NORD), in collaboration with FDA, NIH, EURORDIS, and the Duke Department of Pediatrics, will host the 2nd Annual US Conference on Rare Diseases & Orphan Products: Shaping the Future Now from October 22-24 in Washington, DC. Horsham, PA (PRWEB) October 08, 2012 DIA and the National Organization for Rare Disorders (NORD), in collaboration with FDA, NIH, EURORDIS, and the Duke Department of Pediatrics, will host the [2nd Annual US...

Approval Culminates Years of Advocacy, Education and Relationship Building Led by NORD WASHINGTON, July 9, 2012 /PRNewswire-USNewswire/ -- Signed by President Obama today, the U.S. Food and Drug Administration (FDA) Safety and Innovation Act includes the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983. As the long-standing and recognized policy leader and advocate for the rare disease community, the National Organization for...

LEXINGTON, Mass., Feb. 29, 2012 /PRNewswire/ -- Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today announced its support of Rare Disease Day, an annual, worldwide initiative that calls attention to rare diseases as a public health issue and highlights the need for more understanding and awareness about these diseases. Observed annually on the last day of February, Rare Disease Day is coordinated at the international level by the European...

MIDLOTHIAN, Va., Feb. 17, 2012 /PRNewswire-USNewswire/ -- Patient Services, Inc. will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases. "This is a global observance," said Peter L. Saltonstall, president and CEO of NORD. "Individuals and organizations around the world will all be sharing stories of how...

Patients Will Share What It's Like to Live With A Rare Disease on February 29 WASHINGTON, Jan. 31, 2012 /PRNewswire-USNewswire/ -- On the ultimate rare day - February 29th - millions of people around the world will be observing Rare Disease Day. (Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b) And in the U.S., more than 630 patient organizations, government agencies, research centers and companies, who have signed up as "Rare Disease Day Partners," will join the...