IPF In the News
Want some more news, events and announcements on IPF? We got 'em! [one_half] [/one_half] [one_half_last] Miracle Drug to Become Much More Affordable Soon IPF Treatment Developments You Should…
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IPF In the News
Judging While Being Judged
Come mid-January, eager and anxious girls flood the roads connecting all of the sororities at my school for recruitment, in perhaps what is the most important week of their first…
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Judging While Being Judged
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The 2017 Rare Neuro-Immune Disorders Symposium is Quickly Approaching This October!
On October 20th and 21st, the 2017 Rare Neuro-Immune Disorders Symposium (RNDS) will be held in Columbus, Ohio. The event is meant to bring together patients, families, researchers, and all…
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The 2017 Rare Neuro-Immune Disorders Symposium is Quickly Approaching This October!
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Happy Father’s Day to All Rare Dads
I’ll admit that I ran wild as a kid. I never got into trouble—you know what I mean, I was never arrested, no animals were harmed, and no injuries were…
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Happy Father’s Day to All Rare Dads
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This New Drug Would Change Lupus Nephritis Treatment Forever
In late May of this year, Aurinia Pharmaceuticals Inc. dosed its first patient with voclosporin in a Phase 3 trial known as AURORA. AURORA is a confirmatory clinical trial to…
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This New Drug Would Change Lupus Nephritis Treatment Forever
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Why is She Having a Difficult Time Accessing Marijuana for Seizures and Status Epilepticus?
Sarah Trask had childhood cancer 32 years ago and had four brain surgeries. Sarah is a survivor. As a result, epilepsy is the side effect she is living with. Sometimes…
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Why is She Having a Difficult Time Accessing Marijuana for Seizures and Status Epilepticus?
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Study Results Give MDS Patients a Glimmer of Hope
More exciting news from the Annual American Society of Clinical Oncology Meeting last week! Onconova Therapeutics announced results from a Phase 2 study of oral rigosertib as a treatment for…
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Study Results Give MDS Patients a Glimmer of Hope
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Primary Immunodeficiency: A WAS Story
Once upon a time there were three young brothers, and SPOILER ALERT- this part of the story, unfortunately, does not have a happy ending. Each brother suffered: Each had chronic…
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Primary Immunodeficiency: A WAS Story
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Smallest “Patriots Day” Actor Fights a Real Life Villain: CGD
Hey, do you guys remember that Mark Wahlberg movie that came out not long ago? You know, the one where he’s a cop? No no, not that one. The serious…
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Smallest “Patriots Day” Actor Fights a Real Life Villain: CGD
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What I Think About Superfood Myths and Their Affect on Ulcerative Colitis
The term “superfood” is thrown around a lot. It is used for everything from salmon to spinach, from pistachios to pumpkin, from chia seeds to quinoa. When people use the…
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What I Think About Superfood Myths and Their Affect on Ulcerative Colitis
Rare Disease Leads to Surgical Removal of Nearly 30 Pounds of Feces
"You're so full of sh*t." We've all heard it or said it at some point, be honest! But for one 22 year-old man in China, he was literally full of…
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Rare Disease Leads to Surgical Removal of Nearly 30 Pounds of Feces
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This ITP Drug is on a Roll!
In April of this year, Rigel Pharmaceuticals, Inc. announced that it has submitted a New Drug Application (NDA) to the U.S. FDA for fostamatinib, a drug for patients with chronic…
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This ITP Drug is on a Roll!
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Can this Wristwatch Help People with Parkinson’s Write Again?
With all the new products, widgets, and gadgets out there meant to clutter our life, there is one that manages to maintain style, grace, and cool points while providing a…
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Can this Wristwatch Help People with Parkinson’s Write Again?
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Promising Results From Preventative HAE Treatment Study
Attention hereditary angioedema patients: preventative treatment is on the horizon! Shire plc is one of the global leaders in rare disease research and pharmacology, and the group recently released positive…
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Promising Results From Preventative HAE Treatment Study
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How an Alien Spaceship Gave Me Remission
My freshman year of high school, I began to get strange, red spots on my body. They initially developed on my arms, but within a couple of days, they had…
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How an Alien Spaceship Gave Me Remission
Batten Disease In the News
Want some more news, events and announcements on Batten disease? We got 'em! [one_half] [/one_half] [one_half_last] Pioneering Brain Surgery May Give This Toddler More Time FDA Press Release…
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Batten Disease In the News
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Could Weed Cure Childhood Epilepsy?
GW Pharmaceuticals is finding out... Epidiolex® (manufactured and tested by GW Pharmaceuticals) is a leading medical cannabinoid candidate for the treatment of rare, resistant, and early-onset epilepsy syndromes such as…
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Could Weed Cure Childhood Epilepsy?
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We Need to Find a Cure for Sickle Cell Anemia… Here’s Why
Here's the rundown on sickle cell anemia. It causes a person to have abnormal hemoglobin (sickle hemoglobin) in their red blood cells. In order to understand what I'm talking about,…
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We Need to Find a Cure for Sickle Cell Anemia… Here’s Why
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British Man Running Marathons for Sarcoidosis
Peter Sadler has been raising funds to support the British Lung Foundation, which funds sarcoidosis research. The 42-year-old recently participated in the Bath-Half marathon. He's been on a mission to run in the…
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British Man Running Marathons for Sarcoidosis
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More Natural Treatment Option for Hemophilia A Now Available!
In September, 2015, the U.S. FDA approved NUWIQ®, a recombinant antihemophilic factor (protein essential for normal blood clothing) developed by Octapharma AG, for the treatment of hemophilia A in children…
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More Natural Treatment Option for Hemophilia A Now Available!
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Fact or Fiction: Do You Believe This Young Girl Was Cured of Sickle Cell Anemia?
Okay. Hold the phone for just a minute. I’m a bit concerned after reading an article posted by a young girl who is living with sickle cell anemia. She basically…
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Fact or Fiction: Do You Believe This Young Girl Was Cured of Sickle Cell Anemia?
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Fight for Sight Ball Works for Stargardt Disease
“Whoever you are, I have always depended on the kindness of strangers.” Blanche DuBois may as well have delivered this as a tagline for every charitable organization in the world.…
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Fight for Sight Ball Works for Stargardt Disease
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The Vulnerability of Rare Disease Families
Recently, when another rare mother and I were discussing the many trials that rare disease families face, we agreed that we wished that the general public would understand how vulnerable…
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The Vulnerability of Rare Disease Families
Lennox-Gastaut Syndrome (LGS) In the News
Want some more news, events and announcements on Lennox-Gastaut Syndrome (LGS)? We got 'em! [one_half] [/one_half] [one_half_last] New Research Could Revolutionize LGS and Other Disease Treatments LGS Patients…
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Lennox-Gastaut Syndrome (LGS) In the News
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Boy With ROHHAD Has Precious Wish Granted by Kind Farmer
I recently wrote about an 11-year-old Canadian girl who has an extremely rare disease called rapid-onset obesity with hypoventilation, hypothalmic dysfunction and autonomic dysregulation, or ROHHAD. There are roughly 100…
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Boy With ROHHAD Has Precious Wish Granted by Kind Farmer
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