Rare Tips
Here are 9 things Chris Anselmo wishes someone had told him after his rare disease diagnosis.
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.
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.
Special diets can be a challenging but necessary part of rare disease treatment. Here, a leading dietician offers advice for supporting nutrition from birth through adulthood.
Tips from Know Rare on what to do and what to say to be a supportive ally to a friend, family member, or other loved one who has been diagnosed with a rare disease.
Read about the ways doctors diagnose Autoimmune Hemolytic Anemia (AIHA) and some common symptoms.
We spoke with several teenagers and their parents about how they cope with different aspects of living with rare disease. Here are their best tips and advice.
Muchos pacientes que padecen enfermedades y trastornos raros estarán familiarizados con la fatiga. Aunque pueda parecer una molestia común, la fatiga es un síntoma debilitante que puede mermar la energía física y reducir la claridad mental y el estado de alerta.
This article lists some of the ways that doctors treat Autoimmune Hemolytic Anemia, as well as some of the potential side effects.
MG is a chronic condition with symptoms that come and go. It can be severe, but it’s also a treatable condition. Here are 10 key insights for MG patients and their support networks.
At Know Rare, we believe sharing our questions, experiences, and collective wisdom can help us all in navigating an uncertain course with our rare disease. For medical questions, it is always important to consult your doctor or specialists; however, sometimes it can help to have information to share with them. This is the first of a series of questions we received and the research we’ve found on the topic.
Symptoms of myasthenia gravis (MG) often fluctuate. There may be times when you have only minor symptoms or no symptoms at all.