News

Texas Man Is Fourth In U.S. To Die From Variant Creutzfeldt-Jakob Disease

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AUSTIN, Texas, June 5 (Reuters) – A Texas man has died of the fatal brain illness variant Creutzfeldt-Jakob Disease, the fourth person to die of the disease in the United States, according to the Centers for Disease Control. CJD is a rare, degenerative, fatal brain […]

NBC Reports: Kids With Rare Disease May Hold Secret to Stopping Viruses

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A brother and sister with an extremely rare genetic condition have a stunning ability to fight off viruses— an ability that could lead to a new family of antiviral drugs. Their bodies stop viruses from building a protective shell, which leaves viruses “naked” and vulnerable, […]

GLOBAL GENES™ Launches “RARE Toolkits” as Premier Educational Resource for the Rare Disease Community

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Series of RARE Disease Toolkits Enable Advocates, Patients and Caregivers to Empower Themselves and Inspire Others With 1 in 10 Americans living with rare diseases, the need for access to powerful, actionable information has never been greater. Global Genes™ is proud to launch RARE Toolkits, […]

Want to Prevent Genetic Disease? Study the Healthy Right Now: Stephen Friend at TED2014

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Stephen Friend wants your genes — no, really. Today at TED2014 he announced the Resilience Project, a new crowdsourced effort to understand the quirks and patterns of human genetic code that control— and could help treat— genetic diseases. Thirty years ago, the open-science advocate was working […]

Accurate Diagnosis of Rare Diseases Remains Difficult Despite Strong Physician Interest

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Research published in The Journal of Rare Disorders highlights the need for improved physician education and referral programs. Patients living with rare diseases visit an average of 7.3 physicians before receiving an accurate diagnosis, according to a recent survey of patients, family members, physicians and […]

Parents’ Foundation Brings Rare Disease Out of the Shadows

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Shari and Tom Hume have an unusual wish for their homegrown nonprofit, the Cure JM Foundation. They’d like to put themselves out of business as soon as possible. But 10 years after they co-founded the Encinitas charity with money from a lemonade stand, there is […]

RDLA and Global Genes Urge Patients to Share Their Story with Congress

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Deadline:  February 12, 2014    We are excited to partner with Rare Disease Legislative Advocates  for their Annual Legislative Conference and Lobby Day on February 27, 2014.   If you are unable to join us in Washington DC, but wish to take part in our lobby […]