With Nine Surgeries, A Delhi Woman Fights Von Hippel-Lindau

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Life cannot be more cruel to Payel Bhattacharya, a patient of Von Hippel-Lindau (VHL), a rare autosomal genetic condition that predisposes individuals to benign and malignant tumors. The 34-year-old, who has already undergone nine surgeries, is still suffering as the tumors continue to spread in […]

The Neuropathy Association to Host a “Rare Neuropathies: Getting Diagnosed, Getting Help” Facebook Chat

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In the U.S., the Rare Disease Act of 2002 defines a rare (or orphan) disease as any disease or condition affecting less than 200,000 people (or about 1 in 1,500). Of the over 100+ different types of neuropathies impacting millions in the U.S. alone, there […]

Women Not Getting Appropriate Care for Rare Inflammatory Breast Cancer

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Likely because of their doctors’ ignorance, many women with a particularly aggressive and lethal kind of breast cancer don’t receive the full treatment most likely to beat the disease, according to a Houston study. M.D. Anderson Cancer Center researchers are reporting that one in three patients […]

“Have Hope,” says Bahcet’s Patient, “I Walked in Your Shoes.”

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October of 1998, in an East Coast Gas station, begins my long journey on the road to healing. I felt the first of hundreds of painful ulcers. At the time I had flu-like symptoms on and off for weeks, pain in my joints, pain all […]

Dr. Lakiea Bailey, a Passionate Survivor of Sickle Cell, Joins Fight for Cures

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I am Dr. Lakiea Bailey, research scientist, sickle cell disease patient, patient advocate and activist. Diagnosed with sickle cell disease at age three, I am a passionate advocate for those living with rare diseases and am committed to serving as a voice of encouragement within […]

Canada Joins International Web Portal for Rare Disease Research

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Canada is the first country in the Americas to launch an international Web portal designed to improve research and treatments for rare diseases, Health Data Management reports. Portal Details The international portal– called Orphanet– is led by a consortium overseen by the French National Institute of Health and […]

Patient Advocacy Summit 2014: E-Patient Revolution

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This session is presented by Health 2.0 and Smart Patients. One session. Three segments. Everything you need to know about the E-Patient Revolution and how you can help pull patients in need out of isolation and into the open network of health information. Together, we have […]