Ireland’s First Rare Disease Plan Published


Rare diseases, by their very nature, are one of the most challenging issues for any health service to deal with. A rare disease is defined in the EU as a disease or disorder affecting fewer than five in 10,000 of the European population. Difficult to diagnosis, and often confused with other conditions, rare diseases are also heterogeneous and extremely diverse (there are between 6,000 and 8,000 … [more here...]

Drug Derived From Milk of Genetically Modified Rabbits to Treat Rare Swelling Disorder


The FDA has approved new drug, Ruconest, to treat people with Hereditary Angioedema. The new drug, developed in partnership by Salix Pharmaceutical … [more here...]

Global Genes Webinar Happening Today!

Screen Shot 2014-07-29 at 5.47.11 PM

Using Successful Online Fundraising Strategies Date:  July 30, 2014 Time:  10:00 am PT / 1:00 pm ET Register here! Online fundraising has made it … [more here...]

UK Girl Dies After Doctors Fail to Diagnose Addison’s Disease

Screen Shot 2014-07-23 at 1.02.07 PM

A "VIVACIOUS and lively girl" died after her rare medical disorder went undiagnosed by doctors. Clare Cooper died aged 24 in February 2013 from … [more here...]

City Councilor Diagnosed with Essential Thrombocythemia

Screen Shot 2014-07-24 at 12.45.33 PM

Claremore man David McComb is no stranger to fighting. During his time in the service, and even as a current member of the Claremore City Council, … [more here...]

ArmaGen Announces Collaboration with Shire to Develop Treatment for Hunter Syndrome

Screen Shot 2014-07-23 at 12.48.38 PM

ArmaGen, a privately held biotechnology company focused on developing revolutionary therapies to treat severe neurological disorders, announced today … [more here...]

Upcoming Webinar: Using Successful Online Fundraising Strategies


Date:  July 30, 2014 Time:  10:00 am PT / 1:00 pm ET Register here! Online fundraising has made it easier to raise money to support your cause … [more here...]