Latest Rare Disease Day 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...

More Than $500,000 Worth of Services, Reagents, and Prize Money SAN DIEGO and ST. LOUIS, Feb. 28, 2013 /PRNewswire/ -- In recognition of Rare Disease Day, Assay Depot and Rare Genomics Institute (RGI) today announced the winners of the first ever Rare Disease Science Challenge: BeHEARD (Helping Empower and Accelerate Research Discoveries). In total, more than $500,000 worth of research services will be awarded to study 26 different rare diseases, ranging from Alkaptonuria to...

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...

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...

On 30(th) Anniversary of Orphan Drug Act and NORD, Rare Disease Patient Advocates Fear That Budget Cuts for NIH and FDA Will Slow Momentum WASHINGTON, Feb. 26, 2013 /PRNewswire-USNewswire/ -- On Thursday (Feb. 28), millions of people around the world will be observing Rare Disease Day and this annual observance has special significance for Americans this year for two reasons. The first is that 2013 is the 30(th) anniversary of the Orphan Drug Act - landmark legislation made...

ALISO VIEJO, Calif., Feb. 7, 2013 /PRNewswire-USNewswire/ -- It's time to Care about Rare(TM). Global Genes Project (globalgenes.org), a leading patient advocacy organization representing the rare and genetic disease community, is inviting industry partners, patients, caregivers, family and friends of the tens of millions of people who suffer from rare and genetic diseases to Wear That You Care(TM) during the month of February to support the sixth annual World Rare Disease Day on...

Rare Disease Patient Advocates Celebrate 30(th) Anniversary Today WASHINGTON, Jan. 4, 2013 /PRNewswire-USNewswire/ -- Thirty years ago today, President Ronald Reagan signed the Orphan Drug Act into law to encourage the development of treatments for the millions of Americans with rare diseases. (Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b) The new law represented a triumph of patient advocates working with government partners, the media, and other supporters to...

Patient Advocates and Supporters to Host State House Events for Rare Disease Day 2013 WASHINGTON, Dec. 11, 2012 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) has launched a nationwide campaign to help leaders of rare disease patient organizations - and those who support them - educate their state officials for Rare Disease Day 2013 (Feb. 28, 2013). (Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b) The campaign is just one of many...

SAN DIEGO and ST. LOUIS, Oct. 15, 2012 /PRNewswire/ -- Assay Depot and Rare Genomics Institute have joined together in a unique partnership with 19 life science companies to launch the first Rare Disease Science Challenge: Be HEARD (Helping Empower and Accelerate Research Discoveries). Rare diseases affect over 25 million Americans, yet less than five percent of the 7,000 known rare diseases have any therapy. The hosts and sponsoring organizations are supporting rare disease...

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...