¿Por qué nos cuesta tanto aceptar ayuda? A menudo, las personas asociamos la ayuda con la debilidad y la pérdida de independencia y control. Sin embargo, si cambiamos nuestra forma de pensar, aceptar ayuda puede considerarse una forma de empoderamiento: mostrar vulnerabilidad y confiar en alguien para que nos ayude requiere una gran fortaleza.

Tener una enfermedad rara supone una carga mental enorme. Rare Human Lindsay cuenta que hay cosas que ya no le importan, mientras se ocupa de los síntomas de su enfermedad rara, de los especialistas y de los ensayos clínicos.

Lindsay, de Rare Human, comparte sus «aspectos positivos». No se trata de que «lo que no te mata te hace más fuerte», sino de que lo que no te mata te hace más valiente. Nos cuenta que ha establecido vínculos más profundos con los demás, ha mejorado su capacidad para pedir y aceptar ayuda, y ya no le da tanto miedo la palabra «no».

What is the worst thing that you could say to someone living with a rare disease?

La periodista y defensora de las enfermedades raras Lindsay Guentzel explica por qué los ensayos clínicos son un salvavidas para la comunidad de personas afectadas por enfermedades raras. Dado que solo el 5 % de las enfermedades raras conocidas cuenta con un tratamiento aprobado por la FDA, los ensayos suelen ser la única vía hacia el tratamiento, el progreso y la esperanza.

Lindsay was diagnosed with dermatomyositis a couple of years ago. Since then, she has undergone more than 350 doctor appointments, 250+ hours of infusions, 10+ ER visits, while juggling insurance approvals, rides, and her pain and fatigue.

Rare Human Lindsay is in the midst of her first clinical trial for dermatomyositis, a rare inflammatory disease that primarily affects the skin and muscles. So far, she has learned so much about the process and is eager to share some of her insights with the rare disease community.

Durante un estudio clínico, Lindsay habla de lo difícil que es no tener una comunidad a la que recurrir, sobre todo cuando solo hay unos pocos pacientes con su enfermedad rara (dermatomiositis) que hayan pasado por el mismo tratamiento que ella acaba de recibir.

Find out what Rare Human Lindsay discovered about the clinical trial selection process after joining a clinical study for her dermatomyositis.

For the past 7 months, Rare Human @ lindsay has been trying to enroll in a clinical trial for her dermatomyositis. Learn about the challenges that she faced along the way and how her rheumatologist helped her receive out-of-state insurance coverage.

Gina DeMillo Wagner talks about her book on grief, family chaos, and the invisible weight carried by siblings of those with complex illness.

Watch an intimate and inspiring conversation between Erin Paterson, an internationally recognized rare disease advocate and bestselling author, and Laura Will, a nurse practitioner, writer, and mother of a child with a rare brain malformation. Together, they will explore the complexities of living with and caring for individuals with rare diseases, sharing personal stories, coping strategies, and the power of community.

On the “Rare Insights” podcast we bridge the gap between those living with rare diseases and the biopharmaceutical industry.

Journalist Lindsay Guentzel describes navigating a diagnostic odyssey and how she manages day-to-day life with myositis in an impactful webinar.

Rare mom Samantha Deschenes gives us an unfiltered look into life as a parent to a child with refractory seizures.

Join Know Rare in a heartfelt exploration of the profound impact of journaling on the lives of those touched by rare diseases. In the “Know Rare Connect: Journaling Your Journey” webinar.

In this recap of our first live Know Rare Connect event, we meet some incredible members of the Know Rare team and hear their stories.