EyeForPharma’s Annual Patient Summit USA
The 15th Annual Patient Summit USA At this conference, representatives from the medical field are invited to converge to learn what it truly means to put patients first. If you…
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FDA Commissioner Releases Statement on Targeted Therapies, New Efficiency Measures, and Modernizing Development
According to a story from Pharma Voice, Dr. Scott Gottlieb, the current commissioner of the US Food and Drug Administration (FDA) has recently released a statement in regards to efforts…
Why Psychosocial Oncology Can’t Be Overlooked
When you’re first diagnosed with something like breast cancer, ovarian cancer or another rare condition there’s a million things racing through your mind and a million and one things to…
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Cases of Acute Flaccid Myelitis Continue to Spread in the US
According to a story from the Washington Post, new cases of the unusual, polio-like disease called acute flaccid myelitis have continued to appear through the United States recently. There are…
Genetic Counseling Can Change Lives
"Five to 10 percent of all cancer is hereditary" - Adelsperger Genetic counselors can help you understand not only your own risk for developing cancer but the risk of your…
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Experimental Treatment for WHIM Syndrome Gets Orphan Drug Designation
According to a story from BioSpace, the biotechnology company X4 Pharmaceuticals recently announced that the US Food and Drug Administration (FDA) has given Orphan Drug designation to the company's investigational…
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Program Aims to Help Diagnose Certain Rare Diseases More Quickly
According to a story from PR Newswire, a new program called The Lantern Project is working to provide a free testing program that allow doctors to more quickly diagnose patients…
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NASH will be the leading cause of liver transplantation in the U.S. by 2020
US Congresswoman Lucille Roybal-Allard gave a recent speech in November raising awareness about a looming health crisis for US people. Nonalcoholic steatohepatitis (or NASH), she declares, is looming in…
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A Competition by uBiome is Encouraging Research into the Mircobiome
uBiome is holding a challenge that encourages people to submit proposals for a chance to win a grant. The challenge, called the Clinical Outcomes in Microbial Genomics Innovation Challenge,…
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Selinexor Gets Priority Review From the FDA for Multiple Myeloma
According to a story from OncLive, the drug development company Karyopharm Therapeutics recently announced that the US Food and Drug Administration has granted Priority Review to the company's XPO1 inhibitor…
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New Drug Added to NCCN Follicular Lymphoma Guidelines
According to a story from news-medical.net, Verastem, Inc., recently announced that its drug COPIKTRA (duvelisib) was recently added to the National Comprehensive Cancer Network's (NCCN) guidelines for the treatment of…
2018 International Waldenstrom’s Macroglobulinemia Foundation Events You Don’t Want to Miss
After the 10th International Workshop on Waldenstrom’s Macroglobulinemia for researchers and clinicians, the IWWM10 International Doctor- Patient Forum will be held in the same place on the same day. If…
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Drug Gains FDA Approval For Adenosine Deaminase Immunodeficiency
According to a story from PMLive, Leadiant Biosciences of Italy recently announced that its drug Revcovi has officially received approval from the US Food and Drug Administration. Revcovi was approved…
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Why are Rare Disease Drug Prices Still Rising? Doctors and Advocates Speak Out
According to a story from Charcot-Marie-Tooth News, the continuously escalating cost of drugs in the United States is still plaguing rare disease patients and chronically ill people across the country.…
Tips Towards a Better Diagnosis
When it comes to rare diseases often one of the biggest hurdles is finding the right diagnosis. Tailoring treatment, and adjusting lifestyles can be difficult, but both are impossible if…
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What is it Like to Have a Child With Angelman Syndrome?
According to a story from mirror.co.uk, Lee and Charmaine Taggart of Kent are the parents of Martha, a six year old girl who was born with Angelman syndrome. Martha's diagnosis…
Social Medwork Takes Prescriptions Online
Getting access to medication can be a difficult and demanding process for patients. There are often a number of hoops to jump through, papers to sign, tests to go through…
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“Real World” Studies Monitor The Effects of New Pulmonary Arterial Hypertension Drugs
According to a story from MD Magazine, researchers are using real-world studies, outside of the controls found in the clinical setting, to trace the impacts of multiple recently approved therapies…
Astrophysics Could Improve Treatment for Cystic Fibrosis?
In order to improve the lives of patients for any illness, we all know research is an essential step. We also know that the most accurate research is derived from…
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A Woman with Sickle Cell Disease Has Created a Foundation to Support Others with the Condition
The Noah’s Ark Foundation For Sickle Cell, an NGO based in Lagos, Nigeria, is working to support people with sickle cell disease. In a recent interview with the Nigerian…
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Rare Disease Similar to Polio Appears in Minnesota
According to a story from CNN, a rare disease called acute flaccid myelitis has been cropping up in Minnesota lately, and six kids have been diagnosed with the illness since…
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A Greater Number of Drugs Are Getting Cleared With the FDA’s Accelerated Approval. What Does This Mean?
According to a story from Boston Health News, The US Food and Drug Administration's Accelerated Approval program is being used to approve a steadily growing number of drugs in recent…
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Rare Disease and Personal Identity: Why This Hemophilia Patient Isn’t Interested in a Cure
According to a story from The Atlantic, the continual development of gene editing technologies like CRISPR have the potential to cure a substantial portion of rare diseases that are linked…
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Using Telehealth as a Platform For Speech Therapy
According to a story from Scoop Independent News, speech therapists from the Waikato District in New Zealand have been using telehealth technology to great effect in order to deliver speech…
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Treatment For Glioblastoma Gets Orphan Drug Designation
According to a story from MarketWatch, the biopharmaceutical company MediciNova recently announced that the company's product ibudilast was granted Orphan Drug designation by the FDA. The designation was granted for…
