When Tucker Krause was a young boy, his family noticed that he frequently got sick. More than frequently, even. In fact, when his mom really thinks about it, Tucker was…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
The coronavirus pandemic has significantly altered not just the world we live in, but the way we engage within this new world. It has been difficult and isolating to…
When the COVID-19 pandemic began, many people wondered how it would impact them, especially if living with a rare disease or condition. As the pandemic has progressed, more research has…
Mother of two, Mina Manchester, has been navigating raising two children with an immunocompromising disorder for four years. It's this unique experience that makes her feel more prepared and…
Body Image In today's world, negative body image is unfortunately very common. Research has shown that this trend occurs in women and men, both as children and adults. It affects…
Just days after my CVID diagnosis, I was invited to a support dinner. It was at this support dinner that I became aware of how unique my situation was; I…
I’m writing this article now because it was something that I needed one year ago and didn’t have. I didn’t know anyone who had moved abroad with Common Variable Immunodeficiency…
Happy Friday! We have an FDA approval this week for rare cancer patients! We also have the details on a hypophosphatasia fundraiser. There's also an inspiring story of of a…
Scratchy jeans. No. 2 pencils. Trapper Binders. Squeaky shoes. Floor polish. Helpful bus drivers. Smiling teachers. Ah, the scents, sights and sounds of the first day of school. I loved…
Primary Immunodeficiency (PI) can be very hard to explain to people and very hard to understand. The thing is, most of the time we look healthy on the outside. But…
Common variable immune deficiency is just one of a cluster of disorders under the primary immunodeficiency diseases (PID) umbrella. People with this rare condition are often repeatedly misdiagnosed because there is a…
Let's be honest - watching the news today can be a little depressing. Whether it's political scandals, human rights crises, and the usual doom-and-gloom of war and dangerous world dictators,…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community, bringing awareness, understanding and compassion to often neglected disease. The following article was originally…
If you are the parent of a child who has a rare disease, you know how difficult it can be to explain why they can and can't do certain things.…
En esta cuenta, desde Philly.com, el Dr. Thomas Klein, alergólogo e inmunólogo, describe su problema. Un misterio se había encontrado en su camino que no se creía capaz de resolver.…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y se presiona el juego cuando comenzó a grabar un video explicativo de su rara enfermedad, con frecuencia mal entendida, variable…
In the immunodeficiency department, Cat Latuszek hit the unfortunate jackpot. After a lifetime of ear infections, she was finally diagnosed with Common Variable Immune Deficiency, or CVID, at the age…
When Stephen was growing up, he had no idea he'd one day be diagnosed with Common Variable Immunodeficiency (CVID). As a kid, he had a lot of trouble with ear and sinus problems.…
Si usted es uno de los aproximadamente 1 de cada 25.000 a 50.000 personas en los EE.UU. que viven con inmunodeficiencia variable común (ICV), inyecciones regulares IV son un hecho…
Olivia Trueb vive el sueño de todo adolescente. Al igual que en, ella tiene un equipo de jugadores de fútbol profesionales que se envuelve alrededor de su dedo, y para…
Kathy Antilla recuerda el momento en que escuchó a su hijo, Isaac, decir esas palabras que ella pensó que nunca oiría: "¡Mamá! ¡Mírame! Soy como un niño normal ahora." En…
Los científicos han localizado descubrimiento clave en la categoría de las Enfermedades Raras Un gen que puede jugar un papel en la solución de los misterios de enfermedades autoinmunes como…
Cualquier persona diagnosticada con una enfermedad crónica tiene dos opciones. Opción 1: Vive la vida sin hacer nada y esperar a que llegue el final O Opción 2: Aprender lo…
Inmunodeficiencia Primaria y Disautonomía - Vivir con una enfermedad raraIlana Jacqueline se parece a una mujer joven perfectamente sana, pero las apariencias pueden ser engañosas. Tardó 19 años para que…
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