Tags Posts tagged with "rare disease"

rare disease

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Hosted in part by The Transverse Myelitis Association (TMA)

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Your Sunshine State Getaway The 2017 Annual MDF Annual Conference Registration fee: $200-$250 — covers all conference events (general and breakout sessions, two evening social receptions,...

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Living with PBC: Learning Together For patients, family, healthcare professionals, and so many more! FEATURING: Certified PBC Nurse Educator, Jenny Walker, and a Patient Ambassador, Laurie Call 1-844-514-6294...

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Register for the event here.

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Living with PBC: Learning Together For patients, family, healthcare professionals, and so many more! FEATURING: Certified PBC Nurse Educator, Jennifer Blood, and a Patient Ambassador, Connie Call 1-844-514-6294...

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Register Here
editor's choice
Dravet Syndrome

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TGIF Patient Worthians! This week we have promising results on promising results. First up is news on a Dravet syndrome treatment. Second is a Lupus Nephritis...
Chronic Lymphocytic Leukemia

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On June 21st, Targeted Oncology posted the results from a phase 2 clinical trial for chronic lymphocytic leukemia (CLL). The trial examined the effects of...
Hepatocellular Carcinoma

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Onxeo has recently received the 10th unanimous recommendation from the Data Safety Monitoring Board to continue with the Phase 3 study (coined ReLive) of...
cystinosis
Cystinosis

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You're happily tucking your toddler in for her afternoon nap when she starts to panic. Where's her favorite blankie and stuffed penguin? A peaceful nap...
Mucolipidosis 3

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At any time of the day, in any hospital, a nurse is giving instructions to a parent, spouse, child, sibling or friend of a...
Rare Disease

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Xynomic Pharma, a United States-based oncology research and development company, announced at the end of last month that it had entered into a partnership...

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$200 for members $230 for non-members There will be thought-leaders speaking, general and breakout sessions AND research updates!  

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Living with PBC: Learning Together For patients, family, healthcare professionals, and so many more! FEATURING: Certified PBC Nurse Educator, Jenny Walker, and a Patient Ambassador, Nishele Call 1-844-514-6294 to...
Waldenstrom Macroglobulinemia
Rare Disease

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Communication in the medical field doesn’t happen as much as it should. But, when it does, great discoveries often occur. The thing is, science is...
ROHHAD
Rare Disease

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At 5 years old, Holton Jones was diagnosed with ROHHAD, or rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation. According to the Pensacola News...
Niemann-Pick Disease

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The Danish biotechnology company, Orphazyme, announced in early May of this year that enrollment was completed for its lead study program for Niemann-Pick type...
Charcot-Marie-Tooth (CMT) disease

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In collaboration with the Hereditary Neuropathy Foundation (HNF), Patient Worthy held an essay contest for tickets to a Charcot-Marie-Tooth disease event. We asked members of the...
IPF

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Support for Ofev® just keeps coming! Ofev® (nintedanib) was first approved by the U.S. FDA in 2014 for the treatment of idiopathic pulmonary fibrosis (IPF) after...
Multiple Myeloma

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Results from the Phase 3 CASTOR trial from Janssen Pharmaceutical Companies were recently released, finding that Darzalex (daratumumab) was extremely effective at reducing the...
sickle cell anemia
Rare Disease

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A new public cord blood donation center recently opened up in New York. This is the second of this type of facility to open...
SMA
Rare Disease

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Adyn’s Dream is a charity in Athens, Ohio. The organization provides live events that benefit families and their children that have received a diagnosis of...
Rare Disease

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In Toledo, Ohio an 8-year-old child is one of 100,000 Americans who is affected by sickle cell anemia. According to WNDU, Terrilonnae Chatman has sickle cell...
Mucolipidosis 3

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Due to a rare disease affecting many parts of her body, my oldest daughter, Kelley, saw a number of different doctors in a number...
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