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.
Reducing the spread of viral illnesses is of crucial importance to countries around the world. One such viral illness is Zika virus, a mosquito-borne illness that can be extremely…
Amber Freed has long been a tireless advocate for the rare disease community. After two years of IVF, she became pregnant with her two children: Maxwell and Riley. About four…
Cyndi Strzynski was always a bubbly, active little girl. Even though she has been facing an immense challenge, she still tries to keep a smile on her face at all…
In 2020, Lily Tyson, aged 12 at the time, was diagnosed with a rare chromosomal disorder called Turner syndrome. More recently, Lily began experiencing various eye issues: redness, pain, blurred…
Within the last year, there have been spates of cholera outbreaks in multiple countries across the globe; over the past few months, these outbreaks have touched at least 22 different…
The Orphan Drug Act was passed with a goal in mind: to incentivize the development of therapeutics for orphan drugs. These drugs are used for patients with rare conditions,…
Shifts in treatment paradigms can improve the lives of countless patients and contribute to better overall outcomes. In a news release from February 23, 2023, Sanofi and international biopharmaceutical…
When Cheryl Navar decided to have a child, in-vitro fertilization (IVF) seemed like the right move. Navar knew that she had a cancer gene and didn’t want to transfer…
Together, Sarah Hutchesson-Webb and her fiancé Jake Powell have built a beautiful life together. They welcomed sons Hunter (5) and Aston (2) into the world—and wanted to round out their…
In August 2021, the U.S. Food and Drug Administration (FDA) approved Opdivo (nivolumab) for the adjuvant treatment of a rare form of cancer called urothelial carcinoma. More particularly, the drug…
If there’s one way that 11-year-old Cristian Muñoz would describe himself, it would be an athlete. Cristian has always been drawn to playing sports: the rigor, the competition, the connection…
Vivienne (“Vivi”) Horton has always been a bright and kind, albeit a bit shy and quiet, little girl. So her parents, Valerie and Terry, noticed when she wasn’t acting quite…
Stephanie Felix knew exactly what she wanted for her ninth birthday: to ring the bill at Beverly Knight Olson Children’s Hospital and signify that she was—officially!—cancer-free. When Stephanie was seven…
It’s incredibly important to raise rare disease awareness, spread education, and contribute to a more inclusive and equitable world. One of the best ways to start? Through children. Teaching the…
Although the medical field has made significant strides over the years, there is still a lot we don’t know about the body. For example, what can we learn about…
Jacklyn and Derrick Shaw have supported each other through some of the toughest and most complicated situations that anyone could go through, from a rare disease diagnosis to the loss…
Six years ago, the United MSD Foundation began its annual Zebra Run with a goal of raising multiple sulfatase deficiency (MSD) awareness, as well as garnering funds to advance…
Until recently, the only therapeutic options for people with Friedreich ataxia were symptomatic and focused on symptom management: mobility aids, surgery, psychotherapy, speech therapy, heart medications, hearing and vision…
Each year, March 1 marks the start of Myeloma Action Month; during this month, the International Myeloma Foundation (IMF) encourages people to get involved, share stories, raise awareness and…
Hand weakness, impaired circulation, pain and tightness in the neck, arms, and shoulders: while Jared Walsh, first baseman for the Los Angeles Angels, first started experiencing symptoms related to thoracic…
It’s no secret that diet and nutrition contribute greatly to our health. But how can dietary or nutritional changes help people who are living with certain illnesses? In the past,…
If current estimates are correct, around 10% of people with sarcoidosis within the United States are using off-label TNF-alpha inhibitors such as Remicade (infliximab). But according to an article in…
When Jen and Will Fox remember their son Dalton, they think about his infectious smile, his passion for adventures, and his absolute adoration of baseball. Dalton, who was diagnosed with…
One of the symptoms of scleroderma is the formation of painful ulcers on the fingers. These ulcers are often difficult to manage; they do not respond well to treatment and…
Read Parts 1 and 2 of Katie's story, where we discuss the diagnostic journey, precocious puberty, and Katie's ZMYM2-related disorder diagnosis. Potential ZMYM2 Symptoms and the Need for Research The geneticist mentioned that symptoms…
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