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.

Exploring the unique challenges rare-disease caregivers face, and how mindfulness and inner awareness can offer resilience and renewal.

Inspire es la mayor comunidad en línea del mundo dedicada íntegramente a las experiencias de pacientes y cuidadores. Con más de tres millones de miembros repartidos en más de 250 comunidades específicas para cada enfermedad, Inspire ofrece un espacio donde las personas pueden encontrar apoyo, información y un sentido de pertenencia.

After 14 years of misdiagnosis and debilitating illness labeled as Lyme disease, a mother uncovers the truth—her daughter had aggressive multiple sclerosis (MS). Told through the lens of a fierce advocate and cancer survivor, this emotional account highlights the life-changing impact of finding the right doctor and fighting for those you love when they can’t fight for themselves.

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

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some bathroom hacks.

Cuando se vive con una enfermedad rara o se quiere a alguien que la padece, las dificultades de movilidad pueden resultar agotadoras tanto física como emocionalmente. A continuación te ofrecemos algunas ideas ingeniosas para utilizar los flotadores de piscina.

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some tips for dressing with easiness.

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some ideas for making your home smarter.

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some tips for getting creative in the kitchen.

Discover how ITP patients and physicians differ in their views on fatigue—and how journaling and goal-setting tools can help reduce fatigue and improve overall quality of life.

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.

Discover how genetics and family history influence IgA Nephropathy (IgAN) risk and development, especially in Asian populations.