According to a story from ozarksfirst.com, Jamie Simoson was taken completely by surprise when her three year old son Jonathan started complaining about a headache. As his condition worsened, Jonathan…
John Hornsby Sr., a native of Kentucky, suffered for six months with what he thought was a hernia. John was wrong. He had incurable Non-Hodgkin’s follicular lymphoma, and surgery…
When Ryker Colón was first born, his parents Eddie and Brandi noticed something potentially concerning. Their young son had a chronic cough - and nobody could seem to figure out…
The Powassan virus is extremely rare, however there have been cases of it in the United States. The disease is carried by ticks, but a recent article has pointed…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Those with multiple myeloma within the European Union will soon have access to a new therapeutic option. An article for Cancer Network shares that the European Commission (EC) approved…
According to a story from Neuro Central, pharmaceutical company Merck has provided an update on its findings from its phase 3 clinical trial KEYNOTE-412. This clinical trial was evaluating pembrolizumab…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is…
Oftentimes, data and research play crucial roles in understanding more about both a disease or illness, and also how it impacts those affected. This is especially important in the rare…
Jason and Rachel Moore were always excited to start a family. Currently, the pair has two children – Naomi, age 21 months, and Lacey, age 4 months. But their journey…
This year, the European Hematology Association (EHA) held its Hybrid Conference starting on June 15; if registered for the conference, you may access the Congress Platform until August 15, 2022.…
Will teclistamab soon be available for patients with multiple myeloma within the European Union? According to OncLive, approval seems to be on the horizon. Following results from the Phase ½…
Written By Ashely Winslow, PhD, President & Chief Scientific Officer of Odylia Therapeutics One of the biggest issues impacting many rare disease communities is the availability of approved treatments. While…
The HealthWell Foundation is a nonprofit organization with a mission to reduce financial barriers to care for underinsured patients with chronic or life-altering diseases. The foundation assists with copays,…
Following the approval of carfilzomib (Kyprolis) for relapsed or refractory (R/R) multiple myeloma (MM) in Japan around two years ago, researchers sought to understand the safety and efficacy of the…
Myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), can cause sustained, extreme, and often debilitating fatigue that does not improve with rest. Currently, no approved therapies exist for those with ME/CFS.…
In late June 2022, Patient Worthy discussed how doctors and scientists were concerned about rising rates of nonalcoholic fatty liver disease (NAFLD) in Filipinos. But according to new research, the…
According to a story from Markets Insider, the drug company Kazia Therapeutics Limited recently announced that its investigational therapy paxalisib has been awarded Rare Pediatric Disease designation from the US…
Fibrodysplasia ossificans progressiva (FOP) begins with very little warning. When children are born with FOP, they appear normal aside from a possibly characteristic malformation of the largest toe that…
Although many people in the United States face challenges when seeking healthcare services, new research has found that when seeking a diagnosis for a rare disease, the situation is…
When Stormi Vanden Bosch and Tyler Scotting found out they were expecting another son, they were thrilled. On October 31st, 2019, they welcomed their son Baylor to the world.…
The Catawba Virginia Farmers Market’s mission is to provide the Catawba community with local produce and handicrafts. Stephanie and Donald Schneider owners of Pacaberry Farms have been vendors at the…
For months, those within the rare disease community have been watching to see whether Upstaza (eladocagene exuparvovec) would be approved for use within the European Union. In fact, in…
Written by Molly D'Angelo I’m like most parents in that I never want to see my children hurting physically or emotionally. We would do anything to prevent their pain—put a…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
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