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.
At first, 52-year-old Lisa Wolff thought that she was dealing with sciatic pain. The pain was sometimes dull, sometimes burning, but generally manageable. When the pain became too much to…
February marked National Cancer Prevention Month. This month is designed to better understand, and raise awareness of, preventable causes of cancer; cancer warning signs; and different ways that we can…
In the 2009 draft, the Washington Nationals chose pitcher Stephen Strasburg as their first round pick. Over the years, Strasburg has started 247 times and holds a 113-62 record. This…
Before you continue reading, make sure to check out Part 1 of Katie's story. True Precocious Puberty: The First Official Diagnosis The endocrinologist first ran a blood test, later followed with a…
In the United States, Orphan Drug designation is granted to drugs or biologics designed to treat, prevent, or diagnose rare conditions. “Rare” conditions refer to those affecting under 200,000…
Before you read on, make sure to read Part 1 and Part 2 of Cristina and Isaiah's story. In Part 1, Cristina discusses Isaiah's GA-1 diagnostic journey and some of her favorite memories of…
Katie Brown, age 15, loves learning Spanish, swinging, and special effects makeup. In the future, she is considering a possible career as a writer or a special effects artist; she…
It can be difficult to spur interest in rare disease drug development. Forty years ago, the Orphan Drug Act passed as a way to incentivize drug development within this space.…
When Eric and Samantha Rovinetti learned that they were pregnant with their first child, they were overjoyed. They could not wait to welcome baby Adrianna into the world. But shortly…
Before you read on, make sure to check out Part 1 of Cristina and Isaiah's story. In Part 1, Cristina shared the diagnostic odyssey and fight for answers that led to Isaiah's…
Proteinuria refers to excess protein in the urine. In healthy individuals, proteins pass through the kidneys and into the bloodstream. Proteinuria often indicates kidney dysfunction or damage. In fact,…
Currently, a glioblastoma multiforme (also known simply as glioblastoma or GBM) diagnosis comes with a poor prognosis. There is a 40% survival rate after one year which falls to…
A primary immunodeficiency (PI), or primary immune deficiency disease, is an inherited immune system disorder caused by gene mutations which prevent the immune system from functioning properly. It can…
In the United States, Orphan Drug designation is granted to drugs or biologics being developed to treat, prevent, or diagnose a rare disease. These are conditions affecting fewer than…
At 33 years old, Cristina Urbina has built a beautiful life. Since she was younger, she always knew that she wanted to work with kids. She loves the laughter, the…
Make sure to check out Part 1 of the Schroeder family's story before reading further. CURED Currently, the Schroeder family is doing as well as they can to manage and to ensure…
There have been rising incidences of gastric cancer on a global scale. As a result, this cancer is now considered the fourth leading oncological cause of death worldwide. Gastric cancer…
A Phase 2a study sought to compare the safety, efficacy, and tolerability of ABBV-3373, as compared to adalimumab, for patients with rheumatoid arthritis (RA). Patients involved in the study had…
Silica is a naturally occurring substance that is found in certain types of clay, sand, and rocks. Workers who work with these substances—such as mineworkers, stone masons, construction workers, and…
Before you read on, make sure to check out Part 1 of this story. What is Shwachman-Diamond Syndrome (SDS)? First identified in 1964, Shwachman-Diamond syndrome (SDS) is a rare inherited condition that…
The goal of polymyalgia rheumatica treatment is to reduce inflammation and control or manage the other symptoms. As such, the current standard-of-care includes long-term corticosteroid treatment. According to MedPage Today,…
When asked about the key way that the medical field can better serve patients, Pari Schroeder doesn’t waver: multidisciplinary care. She acknowledges that the medical system can often be very…
According to a news release from mid-January 2023, the FDA granted Rare Pediatric Disease designation to SYNB1934 for phenylketonuria. This designation is granted to drugs or biologics being developed for…
In the first year after her daughter Nora’s Shwachman-Diamond syndrome (SDS) diagnosis, and her daughter Kayla’s subsequent diagnosis, Lisa Superina raised over $130,000 towards SDS research. She held a comedy…
Dr. Muna Naash received her PhD from Baylor College of Medicine, where she studied retinal cell and molecular biology. Throughout her career, Dr. Naash has become known for her work…
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