Orit recently joined the Know Rare business development team with the goal of helping other caregivers and patients learn more about how to engage with clinical studies and other opportunities for support. Here’s how she is reframing attitudes towards life with a rare condition.

Foco en Trial Equity, una organización cuya misión es abordar la infrarrepresentación de diversos grupos de población en los ensayos clínicos, con el objetivo último de promover la equidad en la salud.

The National Tay-Sachs & Allied Diseases Association (NTSAD), leader in the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1 and Sandhoff diseases, is hosting the first-ever, ExternallyLed Patient-Focused Drug Development Meeting for GM2 gangliosidoses (Tay-Sachs and Sandhoff diseases) on Thursday, February 15, 2024.

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.

In his last post, author Chris Anselmo explored why it’s so hard to ask for help. Now, he shares his tips for how to do it with confidence.

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

As we head into 2024, we’ve taken a moment to look back at some of the latest headlines in rare disease from the last year.

Hello, Adversity author Chris Anselmo delves into the common obstacles that make seeking help challenging, particularly for many people living with rare disease, and the transformative power of overcoming those mental blocks.

Edgewise’s investigational drug is a pioneering treatment for Duchenne and Becker muscular dystrophies.

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

Caitlin Eppes shares the inspiring story of The Avery Project, an initiative named after her daughter and dedicated to research of her rare genetic variant, and discusses how her family defied one-in-a-million odds to find a breakthrough in their diagnostic journey.

How writer Chris Anselmo confronts one of the most challenging yet persistent aspects of living with rare disease.

Ongoing clinical trials are paving the way for reducing steroid dependency and improving treatment options for various medical conditions.

A medida que se acerca una fecha clave para el diagnóstico, una madre de un niño con una enfermedad rara reflexiona sobre las complejas emociones asociadas al embarazo.

Know Rare's Medical Advisor, led the Mass General for Children’s Storybook Ball, raising $1.9 million for innovative healthcare and research, while sharing her own personal rare disease journey, and highlighting Know Rare's mission to connect and empower individuals living with rare conditions.

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. 

Una madre de «One Rare Mom» descubre la cruda realidad de los retos a los que se enfrentan las familias que conviven con esta complicada enfermedad.

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.

Descubre qué hacen los especialistas certificados en pediatría y por qué pueden ser un gran apoyo para las familias que se enfrentan a enfermedades raras en este artículo de Katie Whelan, especialista certificada en pediatría y coordinadora de participación familiar.

Una madre de un niño con una enfermedad rara habla sobre los programas de cuidados paliativos y cómo han influido en su familia.