Latest Rare diseases Stories

Craft Brewers Nationwide Join the ALS Therapy Development Institute in the 'Ales for ALS' Campaign to Battle Lou Gehrig's Disease

2013-05-14 08:34:17

CAMBRIDGE, Mass., May 14, 2013 /PRNewswire-USNewswire/ -- The ALS Therapy Development Institute (ALS TDI) announced today that 38 microbrewers across the country have joined the Ales for ALS campaign in support of ALS TDI's mission to discover and develop effective treatments for ALS, commonly known as Lou Gehrig's disease. Ales for ALS(TM) is a unique craft brewery-based fundraising initiative created to accelerate drug development for ALS patients today. (Logo:...

National Organization for Rare Disorders to Celebrate 30 Years of Achievement and Promote a Promising Future for the Rare Disease Community

2013-05-10 12:24:49

30th Anniversary Gala to honor rare disease heroes and support the continuation of NORD's critical work on behalf of the rare disease community WASHINGTON, May 10, 2013 /PRNewswire-USNewswire/ -- The 30(th) Anniversary Gala of the National Organization for Rare Disorders (NORD), to be held Tuesday, May 14, 2013, will honor rare disease heroes, celebrate 30 years of progress through the Orphan Drug Act (ODA) and NORD, and promote a promising future for the rare disease community....

Cancer Drug Prevents Build-Up Of Toxic Brain Protein

2013-05-10 11:57:50

Researchers at Georgetown University Medical Center have used tiny doses of a leukemia drug to halt accumulation of toxic proteins linked to Parkinson's disease in the brains of mice. This finding provides the basis to plan a clinical trial in humans to study the effects. They say their study, published online May 10 in Human Molecular Genetics, offers a unique and exciting strategy to treat neurodegenerative diseases that feature abnormal buildup of proteins in Parkinson's disease,...

Partnership Formed to Explore Personalized Medicine Approach for Amyotrophic Lateral Sclerosis (ALS) Treatments

2013-05-10 04:21:40

SAN DIEGO, May 10, 2013 /PRNewswire-USNewswire/ -- The ALS Emergency Treatment Fund (ALS-ETF) and Denovo Biomarkers (Denovo) have announced a partnership to explore using Denovo's technology to identify potential responder groups for drugs being studied in ALS patients. This personalized medicine approach may accelerate drug development in ALS and other life-threatening disorders. The partnership will integrate Denovo's pharmacogenomic technology into the analysis of biological...

BAYADA Partners with The ALS Association to Provide Care & Support to Families Living with Lou Gehrig's Disease

2013-05-06 08:31:22

WASHINGTON, May 6, 2013 /PRNewswire-USNewswire/ -- BAYADA Home Health Care is now a national partner of The ALS Association and a Walk to Defeat ALS® Gold National Team. The suburban Philadelphia, Pa.- based company, which provides nursing, rehabilitative, therapeutic, hospice, and assistive care services to children, adults, and seniors in the comfort of their homes, has joined forces with the national non-profit to raise awareness of amyotrophic lateral sclerosis (ALS), otherwise...

Nearsightedness May Be Due To Genetic Mutation

Genetic Mutation's Role In High-Grade Myopia Examined

2013-05-03 06:01:19

redOrbit Staff & Wire Reports - Your Universe Online Researchers have discovered a link between nearsightedness and mutations in a gene partially responsible for the regulation of copper and oxygen levels in eye tissues, according to a paper published in Thursday’s edition of the American Journal of Human Genetics. Nearsightedness, which is also known as myopia, is a condition which results when a person’s eye is too long or there is too much curvature in their cornea, which...

ALS Therapy Development Institute Adds Two Board Members

2013-05-02 08:38:49

CAMBRIDGE, Mass., May 2, 2013 /PRNewswire-USNewswire/ -- The ALS Therapy Development Institute (ALS TDI) announced today that it has added two members to its board of directors: Robert Sepucha Jr. and Michael M. Smith. The Institute's board grows to include 14 members with deep ties to the ALS community, academic research, philanthropy and pharmaceutical development. (Logo: http://photos.prnewswire.com/prnh/20110204/DC42625LOGO) Robert Sepucha Jr. is senior vice president, policy...

ALS Canada Research: On The Cusp of a New Frontier

2013-05-02 08:38:39

TORONTO, May 2, 2013 /CNW/ - Years of steadfast Canadian commitment to advancing high-risk, high-potential research pays new dividends in the fight against ALS, commonly known as Lou Gehrig's disease. Canadian scientists are major players on the international scene in terms of discoveries, productivity, collaborations in clinical trials and contributions to science. Based on peer-reviewed publications per capita, Canadian scientists are leaders in the G8. From May 4-6,...

TSC Global Awareness Day Scheduled for May 15

2013-05-02 08:35:50

SILVER SPRING, Md., May 2, 2013 /PRNewswire-USNewswire/ -- On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the second annual TSC Global Awareness Day. On this day, thousands of individuals and families affected by TSC will join together to increase public awareness of the rare disease and share their stories of hope for the future. This year's TSC Global Awareness Day will also highlight...

The ALS Association Launches Online and Social Media Campaign during May, ALS Awareness Month

2013-05-01 16:30:25

WASHINGTON, May 1, 2013 /PRNewswire/ -- According to its most recent website traffic statistics, The ALS Association finds that more and more people are visiting www.alsa.org looking for information about the disease, its symptoms, diagnoses and treatments. This May, The ALS Association will mark ALS Awareness month by working to turn that interest into action through a vibrant online and social media campaign around the shared vision to create a world without ALS. To view the...