Alert - rare disease
2 views
Skip to first unread message
Nils K Oeijord
Aug 22, 2013, 3:53:41 PM8/22/13
to derailed-...@googlegroups.com
| ||
| Girl, 9, dies after battle with rare debilitating disease Chicago Tribune (blog) Kira Mammoser, a 9-year-old girl who captured public attention this month when she received a surprise visit from two police horses, has lost her battle with an extremely rare disease, her family said Thursday. She died about 6:30 p.m. Wednesday, ... See all stories on this topic » | ||
| Crawley man with rare disease to feature in British Medical Journal This Is Sussex His oesophagus eventually had to be removed and replaced with one made from his stomach lining in a pioneering operation in March 2012. But even then the disease was not discovered until a few weeks later by surgeon Yuen Soon at the Royal Surrey ... See all stories on this topic » | ||
| Pleasant Grove community rallies around 4-year-old boy with rare disease Deseret News "I'm a keep-to-myself kind of girl," Vimahi said in an email to her colleagues explaining her son Nami's rare condition, which causes him to suffer hundreds of seizures every day, "but these past few years have pushed me to do things I never thought I ... See all stories on this topic » | ||
| Three brothers with rare disease flying to Hawaii thanks to a wish WDAY Not one, but all three of their boys had PKAN, an extremely rare genetic disease that affects only a few hundred people in the U.S. There is no known cure. Laura Kulsrud, Mother: "It's a mutated gene that sends too much iron to the brain and causes ... See all stories on this topic » | ||
| BioMarin gets US priority review for rare disease drug PharmaTimes Vimzin is an enzyme replacement therapy for which the drugmaker is seeking approval as a treatment for the rare lysosomal storage disorder Mucopolysaccharidosis Type IVA (MPS IVA), also known as Morquio A Syndrome. During an initial review of the ... See all stories on this topic » | ||
| New Zealand Organisation for Rare Disorders – May Newsletter Scoop.co.nz (press release) Governments carer payment decision stuns the carer community. 2 -PNH Support Association campaigns for funded access to novel medicine. 3 Exciting developments at international rare disease research consortium. 4 Big steps forward on ... See all stories on this topic » | ||
| CBPartners Runs ISPOR Workshop Evaluating Orphan and Ultra-Orphan HTA ... Newsday The workshop used a case-based approach focusing on rare diseases including Hodgkin's Lymphoma, Myelofibrosis, Cystic Fibrosis, Chronic Lymphocytic Leukaemia, and Madoteaux-Lamy Syndrome. The session was led by Ms. Monica Martin de ... See all stories on this topic » |
Tip: Use quotes ("like this") around a set of words in your query to match them exactly. Learn more.
Delete this alert.
Create another alert.
Manage your alerts.
Nils K Oeijord
Aug 22, 2013, 3:52:56 PM8/22/13
to derailed-...@googlegroups.com
| ||
| Rare performance to fight rare disease Greenwich Time Michelle Phillips of The Mamas & The Papas embraces Andrew Marella of Greenwich. Phillips will perform with The Beach Boys at Stamford s Palace Theatre Saturday to raise money for a cure for Niemann-Pick type C, a rare and fatal genetic disease. |
| Gowing's not done yet: Popular doctor leaving Cambridge Memorial, but he'll ... Waterloo Record Rare diseases are a passion for Gowing, who diagnosed more than 20 rare cases during his career. That includes the highly publicized case of a Cambridge teenager who was suffering from pulmonary arterial hypertension, a life-threatening disease with no ... |
| Disease leaves boy's future unclear The Northwest Florida Daily News He was born with a rare disease known as ichthyosis, a disorder that affects the production of the outer layer of his skin. “Teo makes as much skin in four days as we do in 14 days,” said his mother, Cara Tundidor. “His father and I both have the ... |
Nils K Oeijord
Aug 22, 2013, 3:50:38 PM8/22/13
to derailed-...@googlegroups.com
| ||
| Local woman struggles with rare disease Dublin People HAE is a rare disease that causes swelling to various parts of the body, resulting in pain and disfiguration. According to Ms Carty, only around 40 people in Ireland are affected by HAE. “I was misdiagnosed at an early age with the disease, and it was ... |
| Juneau teen controls rare disorder, graduates Fairbanks Daily News-Miner In this May 17, 2013 photo, Taylee Escalante talks about her illness during an interview at Juneau-Douglas High School in Juneau, Alaska, Escalante, a senior at JDHS, suffers from vasculitis, a group of disorders that destroy blood vessels by inflammation. |
| Condition of Man with Rare Cotard's Syndrome Improves TopNews New Zealand ffecting just about a hundred people across the world, Cotard's syndrome is a rare disease in which a sufferer begins to feel that he is dead and none of his body parts exist. Also known as 'Walking Corpse Syndrome, the condition affected a man named ... |
Nils K Oeijord
Aug 22, 2013, 3:49:48 PM8/22/13
to derailed-...@googlegroups.com
| ||
| A charmed life: rare disease brings doctor, patient and their families together Florida Times-Union The word rare is overused. But in this case, it only starts to describe the story of a disease, a girl from a small town near Savannah, Ga., a doctor in Jacksonville and how their lives came together. Fewer than 200 people have been diagnosed with ... |
| An unpredictable disease The Star Online An early diagnosis for multiple sclerosis can be easily missed as it is a rare disease and symptoms can sometimes be non-specific or mimic other more common medical conditions. SHARIFAH was 18 years old when she was diagnosed with multiple sclerosis ... |
| Prothena May Have The First Disease-Modifying Therapy For Amyloidosis Seeking Alpha Amyloidoses are rare diseases characterized by the uncontrolled production of bundles of misfolded amyloid proteins, which accumulate in tissues causing organ failure and ultimately death. Amyloid light chain (AL) amyloidosis, the most common form, ... |
Reply all
Reply to author
Forward
0 new messages