According to a story from news-medical.net, a recent study suggests that a class of drugs called BRAF inhibitors could be an effective treatment option for ovarian cancer patients who carry…
If you or someone you know has ADPKD, email us at [email protected]. We'd love to hear from you about your experience! What is PKD and ADPKD? PKD (polycystic kidney disease)…
According to a story from CheckOrphan, Durhane Wong-Rieger, the CEO of the Canadian Organization for Rare Disorders, says that the Canadian health system has been letting down the roughly three…
According to a story from nbcnews.com, a recent map from the Centers for Disease Control and Prevention (CDC) indicates that children have the highest rates of cancer in the Northeast.…
Our partner, the MDS Foundation, is sponsoring another free event for patients with MDS and caregivers. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver…
Elmo and friends are here to help! - thanks to the good people of The National Association of Community Health Centers (NACHC)! For those who have never heard of the NACHC,…
On August 16th, 2018, Aretha Franklin, the "Queen of Soul," passed away at age 76. Aretha will be immortalized for generations because of the success of her classic soul ballads…
Gabriel Low, a 17-year-old from Hawaii, just completed a 3,000-mile bike ride across the country. He’s been riding since June 11th when he embarked from Seattle, WA to raise awareness,…
The Beginning My story began in February 2011. On January 10th, 2011, my husband and I were involved in an accident in which we slid off the side of a bridge 10 feet face…
A recent study published in the journal Clinical Cancer Research has found that a certain protein called KIM-1 may be able to predict renal cell carcinoma up to five years before…
In January-March of 2015, I was the healthiest I’d ever been... or so I thought. I worked out, drank plenty of water, had a great lifestyle and meal plan. In…
According to a story from PR Newswire, patients with Alport syndrome, supported by the National Kidney Foundation and the Alport Syndrome Foundation, were involved in a meeting with representatives from…
Our partner, the MDS Foundation, is sponsoring another free event for patients and caregivers. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this…
The survival rates for infants and children with brain and spinal cord cancer has improved significantly over the past decades. However, a study published online in early August of…
According to a story from Pharma Times, four new medications were recently approved for coverage on the Scottish NHS by the Scottish Medicines Consortium (SMC). Some of these drugs are…
Nitu is eleven years old. She lives in Shayestanagor in Habiganj (a region within Bangladesh). While most 11-year-old children are full of energy, Nitu must stay at home. Nitu lives…
The US FDA has awarded Breakthrough Therapy Designation to encorafenib (braftoviTM) combined with binimetinib (mektovi®) and cetuximab for use as an investigational (not FDA-approved) treatment of BRAFV600E–mutant metastatic colorectal cancer.…
According to ASHA.org, when Tiffany Turner graduated, she set out to expand opportunities for fellow speech language pathologists like herself. Turner saw a great need in her community for…
Gaucher patients in New Zealand are facing a change. New Zealand’s Pharmaceutical Management Agency (PHARMAC) recently proposed a change in their supported Gaucher treatment from Cerezyme to Elelyso. The switch…
According to VeroNews, one of the biggest issues at the retirement community Treasure Coast is malnutrition. For patients with other serious conditions, like chronic kidney disease, the hospital as…
According to a story from Live Science, a species of tick that is originally found in Asia has begun to appear along the East Coast of the US. The parasite…
A Biologics License Application for ElzonrisTM (also known as tagraxofusp and SL-401) for the treatment of blastic plasmacytoid dendritic cell neoplasm has been accepted for filing by the United States FDA.…
Calling all members of the GNE Myopathy community! The Neuromuscular Disease Foundation (NDF) is hosting its 5th Annual Symposium on GNE Myopathy this August 30-31st at the University of California, Los Angeles. For…
Researchers are exploring a new diagnostic method that could be applied to newborn screening for certain inherited diseases and monitoring of HIV patients. For more detailed information, you can click…
According to DAIC, Akcea Therapeutics Inc., has recently announced their publication of results from their study analyzing patient-to-patient connectivity towards the management of the rare disease familial chylomicronemia syndrome (FCS).…
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