Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.
Don't forget to check out Parts 1 and 2 of our interview, where we discussed APFED, eosinophilic esophagitis (EOE), and Lori's diagnostic process. Today, in the final portion of the interview, we're…
Did you know that July is widely considered to be Sarcoma Awareness Month? During this month, many stakeholders - from patients to researchers - aim to raise awareness of sarcomas,…
According to Cure Today, the U.S. FDA granted Orphan Drug designation to MB-106, a novel CAR-T cell therapy designed to treat Waldenström macroglobulinemia (WM). In the United States, Orphan…
In a news release, biopharmaceutical company Fulcrum Therapeutics, Inc. ("Fulcrum") shared that the first patient was dosed in the Phase 3 REACH study. Within the study, researchers are evaluating…
If you're just joining us, don't forget to take a look at Part 1 of this interview. In Part 1, we discussed Lori and Mary Jo Strobel, what eosinophilic esophagitis (EOE) is,…
Food has the power to change lives, to spark connection and understanding, to raise cultural awareness, and to bring people together. Nobody knows this better than 48-year-old Lori, who spent…
In a press release on the company website, biopharmaceutical company AbbVie shared that preliminary data was available regarding navitoclax, an investigational therapy, for individuals with primary myelofibrosis. The data…
The ENDO 2022 Annual Congress took place from June 11-14, 2022. During the Congress, stakeholders met to discuss care, treatments, and research within endocrinology. In a news release from…
In 2019, Courtney and Michael Henderson welcomed the newest member of their family – their son Luke. They were thrilled at this new addition, who they say is one…
From May 13-18, 2022, the American Thoracic Society (ATS) held its Annual Meeting, where researchers and stakeholders discussed research, patient care, and public health trends within the fields of…
In many cases, orally administered PDE5 inhibitors – such as Cialis, Levitra, and Stendra – have been used to treat erectile dysfunction. These vasodilating drugs were found to be…
The number of Alzheimer’s disease diagnoses has been rising rapidly over the last few decades. Today, an estimated 6.5 million Americans alone are living with this disease. Yet there…
The American Society of Clinical Oncology (ASCO) Annual Meeting (“ASCO 22”) took place this year from June 2nd through the 6th, 2022. During this Annual Meeting, stakeholders within the…
Have you ever heard of Orphan Drug designation? In the United States, this designation is granted to drugs or biologics that intend to treat, prevent, or diagnose rare diseases…
For some patients with NF2-deficient malignant pleural mesothelioma (MPM), their cancer is unresectable, meaning that it cannot be surgically removed. Finding a way to better treat and assist these…
Sometimes, doctors choose to treat a certain condition with a specific medicine or class of medicines. But what happens when that medicine causes unintended and potentially harmful reactions? For…
The last approved treatment option for Pompe disease in Europe was given approval in 2006, so 16 years ago. However, the European Commission (EC) recently approved a new therapeutic…
Pulmonary arterial hypertension (PAH) is a chronic and progressive form of high blood pressure in the lungs which can result from a number of causes: HIV, sickle cell disease,…
Sometimes, it can be difficult to diagnose amyotrophic lateral sclerosis (ALS), a progressive neurological disease which causes nerve cell (motor neuron) death in the brain, brain stem, and spinal…
Unfortunately, it can sometimes be difficult to get companies to perform research and develop therapeutics for rare diseases, but the FDA came up with a process to spur research…
When Ivy Reed was just two weeks old, she was first diagnosed with two conditions: non-verbal autism and propionic acidemia, the latter of which is a rare metabolic disorder. Because…
Over the last few decades, there have been immense advancements in medical technology and care options. However, not all of these advancements contribute to better patient outcomes. For example, more…
This year, the National Lipid Association held its Scientific Sessions from June 2-5, 2022. During the Scientific Sessions, attendees discussed new research, clinical best practices, and other topics within this…
Did you know that atrial fibrillation (AF) increases the risk of a stroke by 3 to 5 times? However, blood thinners such as warfarin, or other potential treatments, can protect…
In the United States, Orphan Drug designation is granted to drugs or biologics intended to treat, diagnose, or prevent rare or life-threatening diseases or conditions. Rare conditions are those affecting…
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