By Lauren Thayer from In The Cloud Copy Systemic mastocytosis (SM) is a complicated condition of the blood in which excessive numbers of mast cells (a type of white blood…
By Danielle Bradshaw from In The Cloud Copy In a six-month long early rheumatoid arthritis (RA) trial - which was called NORD-STAR - researchers reported at the European League Against…
Just last month, the FDA approved MYCAPSSA for patients with acromegaly who have previously been treated with octreotide or lanreotide. As the first FDA-approved oral somatostatin analog, developer Chiasma…
Last month, according to an article in the Washington Post, the FDA allowed marketing of a video game as potentially beneficial to children who have been diagnosed with attention-deficit hyperactivity…
Happy Friday! July is almost over, which means that Juvenile Idiopathic Arthritis Awareness Month is drawing to a close. But it's not too late to bring attention to this often…
By Danielle Bradshaw from In The Cloud Copy The chances of your child having Jordan’s syndrome are incredibly small. That, however, was not the reality for Joe Lang and his…
As of right now, there are no treatments for Alzheimer's disease, a progressive neurodegenerative disorder. However, that may soon change. A study led by UCLA researchers identified potential drug…
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…
By Lauren Thayer from In The Cloud Copy Parkinson’s disease is a neurodegenerative disorder that is progressive, resulting in the patient having problems with movement. The symptoms of Parkinson’s disease…
By Lauren Thayer from In The Cloud Copy Systemic sclerosis is a rare autoimmune disease that is characterized by vascular abnormalities and fibrosis of various parts of the body, including…
According to a story from the Columbus Dispatch, Brian McNeal has been living with trigeminal neuralgia for four years. The rare disease leaves him in constant facial pain. The chronic…
The pandemic has made it difficult to get the same healthcare that we are used to. It is even harder for those who live with a medical condition or serious…
Over the last few days, the American Society of Retina Specialists (ASRS) held their Annual Virtual Meeting; coined "2020 Virtual Sessions," professionals converged online to share insights into ophthalmological…
When it comes to COVID-19, many people believe, "Well, it can't happen to me!" But with 16.8 million diagnosed cases worldwide, and nearly 4.5 million of those in the…
Despite rigorous testing before pharmaceutical products are introduced to the market, some still present negative side effects. In a discussion on Beovu (brolucizumab), used to treat neovascular macular degeneration…
In a recent press release, biopharmaceutical company Regulus Therapeutics, Inc. announced that their drug candidate, RGLS4326, received Orphan Drug Designation for the treatment of autosomal dominant polycystic kidney disease…
By Danielle Bradshaw from In The Cloud Copy A research team has found a connection that ties disease-linked alpha-synuclein proteins and their tendency to loosely combine (or to aggregate) and…
According to a story from Psychology Today, one of the most unique genetic disorders known to science it called Williams syndrome. While the disorder causes intellectual disability and other chronic…
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.…
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…
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…
Excited, nervous, worried: a lot of varied emotions go into being pregnant and giving birth. But during COVID-19, a global pandemic? It's understandable that those feelings are amplified. Currently,…
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…
While medications and surgery can both improve gastroparesis symptoms, many patients still struggle with finding the right treatment. However, a new medication might soon help: tradipitant. In a study published…
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
