FDA-Approved iOS App Coordinates Neuromodulation Therapies
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FDA-Approved iOS App Coordinates Neuromodulation Therapies

  According to Parkinson's News Today, the FDA recently approved an iOS app to assist patients with neurological disorders. Developed by Abbott, the Patient Controller App offers unique telemedicine at…

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Three Young People With Chronic Illness Talk About the Challenges They Face
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Three Young People With Chronic Illness Talk About the Challenges They Face

  Three people with an eye on the future talk about their innermost feelings and the fact that their lives may be interrupted at any time by their chronic illness.…

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Blueprint Medicines Submits New Drug Application to the FDA to Treat Thyroid Cancer
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Blueprint Medicines Submits New Drug Application to the FDA to Treat Thyroid Cancer

  A recent article in BioSpace reported that Blueprint Medicines Corp. has submitted a New Drug Application (NDA) to the FDA for the investigational drug pralsetinib with an action date…

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Combining Three Drugs in the Treatment of Multiple Myeloma Patients Shows Solid Clinical Activity
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Combining Three Drugs in the Treatment of Multiple Myeloma Patients Shows Solid Clinical Activity

  According to data from the STOMP trial involving thirty-four patients, a triple regimen has been proven to induce durable responses in pretreated patients with relapsed/refractory multiple myeloma. A recent…

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Rare Disease Advocacy Group has Innovative Idea to Raise Awareness Amidst Social Distancing
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Rare Disease Advocacy Group has Innovative Idea to Raise Awareness Amidst Social Distancing

Gaucher Disease Awareness Month takes place every October, but amidst this new global pandemic, planning has taken place early to figure out how to make the month as successful as…

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The ADA is 30 Years Old. What Does it Mean to Young People with Disabilities?
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The ADA is 30 Years Old. What Does it Mean to Young People with Disabilities?

According to a story from Youth Today, the Americans with Disabilities Act (ADA) was first passed 30 years ago, in 1990. This historic law helps protect people that live with…

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New Study Evaluates Peripheral Neuropathy Associated with Chemotherapy in Charcot-Marie-Tooth Disease Gene Variants
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New Study Evaluates Peripheral Neuropathy Associated with Chemotherapy in Charcot-Marie-Tooth Disease Gene Variants

Chemotherapy-induced peripheral neuropathy, or CIPN, is a common side effect of chemotherapy. A recent study aimed to uncover whether or not oxaliplatin chemotherapy increased risk of CIPN for those with…

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Scares That Care Virtual Charity Event Supporting Marfan Syndrome Patient to Take Place August 1st
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Scares That Care Virtual Charity Event Supporting Marfan Syndrome Patient to Take Place August 1st

Scares That Care Scares That Care is a 501(c)(3) organization, first established in 2007 by Joe Ripple, dedicated to fighting the "monsters" of childhood illnesses, breast cancer, and burns. They support…

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Nonprofit Encourages Charcot-Marie-Tooth Disease Patients to Stay Active
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Nonprofit Encourages Charcot-Marie-Tooth Disease Patients to Stay Active

According to a story from Charcot-Marie-Tooth News, a new nonprofit organization called Shark Tooth Cycling has recently begun operations. The mission of the organization is to encourage young people in…

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New Partnership Formed to Develop Angelman Syndrome Treatment
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New Partnership Formed to Develop Angelman Syndrome Treatment

According to a story from Globe Newswire, the biopharmaceutical company Ovid Therapeutics and the University of Connecticut School of Medicine (UConn) have announced a new license agreement and research collaboration…

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Traveling with Atypical Hemolytic Uremic Syndrome: Tips for Patients
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Traveling with Atypical Hemolytic Uremic Syndrome: Tips for Patients

According to a story from ahusnews.com, traveling with atypical hemolytic uremic syndrome (aHUS) takes some extra preparation and planning ahead. This syndrome can affect multiple organ systems and especially the…

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Patient Treated for Multiple Myeloma Develops Myasthenia Gravis: Case Study
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Patient Treated for Multiple Myeloma Develops Myasthenia Gravis: Case Study

According to a story from Myasthenia Gravis News, a recent case report describes a unique case of a 60 year old male multiple myeloma patient. After receiving treatment for the…

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Her Double Diagnosis: aHUS and Autoimmune Thyroid Disease May Be Related
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Her Double Diagnosis: aHUS and Autoimmune Thyroid Disease May Be Related

In a study published in BMC Pediatrics, researchers have found atypical hemolytic uremic syndrome (aHUS) and autoimmune thyroid disease may not only be a relatively common pair of rare diseases…

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Familial Chylomicronemia Syndrome: Two Patients Help Spur Changes at the FDA
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Familial Chylomicronemia Syndrome: Two Patients Help Spur Changes at the FDA

According to a story from msn.com, two women who were impacted by the rare disease familial chylomicronemia syndrome (FCS) have lead the charge in changing the procedures used by the…

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Interim Data from this Cutaneous T-Cell Lymphoma Trial is Looking Promising
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Interim Data from this Cutaneous T-Cell Lymphoma Trial is Looking Promising

According to a story from BioSpace, the biopharmaceutical company Bioniz Therapeutics, Inc., has recently announced the release of interim results from its phase 1/2 clinical trial. This trial is investigating…

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New Anti-Cancer Drug May Benefit Many Rare Diagnoses
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New Anti-Cancer Drug May Benefit Many Rare Diagnoses

A study conducted by researchers from the Institute of Cancer Research in London and Cyclacel has recently been published in PLOS ONE. This investigation examined fadraciclib as a potential therapy…

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