For many families, caregiving for a child with a rare or medically complex condition is a full-time job. The problem is, it’s a job with no training, no time off, and no clear job description. If you’re looking for the light at the end of the tunnel, you don’t have to search alone. Check out some of Paige’s favorite resources. 

For most of celiacs, despite months on a strict GF diet, energy stays low and blood work reveals nutrient deficiencies. The lesson? A "gluten-free" label isn't a health guarantee—just a guarantee you'll pay more.

Cuando me diagnosticaron la enfermedad celíaca, pensé que bastaría con evitar el pan y la pasta. Pronto me di cuenta de que llevar una vida verdaderamente sin gluten es mucho más complicado, y comparto mi experiencia para ayudar a las personas recién diagnosticadas a comprender lo que les espera.

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.

Descubra cómo la educación del paciente permite a las personas con enfermedades raras comprender mejor su diagnóstico, tomar decisiones informadas y participar activamente en sus planes de tratamiento. Descubra por qué una comunicación clara y empática es fundamental para mejorar los resultados en la atención de las enfermedades raras.

Si te enfrentas a copagos elevados y te cuesta hacer frente a los gastos de tu tratamiento, aquí tienes algunas opciones que pueden ayudarte a reducir el coste de tus medicamentos.

When you live with a rare disease, the joyful experiences risks can bring are all the more valuable.

How physical activity impacts this rare condition—and why you need to know about it.

All about Congenital Myasthenic Syndromes at a glance

Get essential information about congenital myasthenic syndromes (CMS) and why clinical trials are a crucial element in the path towards better treatment for the condition.

Get the basics on needle anxiety, one of the top medical fears among children, and discover tips to manage it.

On World Oral Health Day (March 20), we’re taking a closer look at what your oral health can tell you about your well-being.

As we step into Rare Disease Month this February, it's an opportune time to celebrate resilience, foster connection, and empower ourselves within the rare disease community.

An expert on adolescent health shares tips for families navigating substance use concerns alongside rare disease.

It’s National Influenza Vaccination Week: find out why the flu vaccine should be a critical part of your winter to-do list.