Women Not Getting Appropriate Care for Rare Inflammatory Breast Cancer


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.”


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


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


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


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 […]

9-Year-Old with Brain Iron Accumulation Requests Birthday Cards


Meet Ali Najera. Ali is a 9-year-old girl who loves Disney princesses, seashells, and making new friends. But Ali is also suffering from a condition known as Neurodegeneration with Brain Iron Accumulation (NBIA). This rare, debilitating condition reduces much of her physical capabilities, and Ali […]

Proteus Syndrome No Match for Savannahian Patient

Screen Shot 2014-08-11 at 9.53.40 AM

Seriously, sometimes he says his face hurts from smiling so much. According to Savannahian Daniel DeLoach, 27, “there are always people out there in much worse situations.” Here’s his: 105 surgeries — so far — including two spinal cord surgeries, three body casts, two near-death […]