La Red Global de Enfermedades Raras Red de Apoyo
Know Rare ofrece acceso a apoyo, herramientas y conocimientos de los principales líderes e investigadores en el ámbito de las enfermedades raras.
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How We Help
We provide support, apps, and information to improve your rare disease journey.
Buscador de investigaciones poco comunes
Get help finding & connecting with rare disease medical centers & clinical trials.
Rare Journaling App
Nuestra nueva aplicación «Healthstory AI» te ayuda a llevar un diario y a obtener información sobre tu vida cotidiana.
Rare Disease Blog
Aprende y obtén recursos de expertos, cuidadores y otras personas como tú.
Acerca de nuestra red de apoyo
Ayudamos a poner en contacto a las personas, los investigadores y las comunidades en el ámbito de las enfermedades raras
+25,000
Miembros con enfermedades raras
+300
Centros médicos en todo el mundo
50+
Organizaciones de pacientes
After my son’s diagnosis, I had so many questions and didn’t know where to turn for answers. Know Rare provided incredible support by connecting us to the right specialists. Can’t thank them enough for giving us hope for the future!
Fran, Mom of Diego
Diagnosed with Propionic Acidemia
Meet Our Support Team
Our team of dedicated nurses are here to guide families to doctors, medical centers, and vital clinical trials, offering them guidance, solace, and support along the way.
In need of care and support?
Christine Kim
Before joining Know Rare, I worked in research coordination for qualitative studies and built a strong background in compliance and ethics within clinical trial management. Driven by a passion for advocating for patient rights, especially for those with rare diseases, I have successfully connected patients to clinical trials as a Patient Support and Recruitment Manager. My goal is to continue bridging patients with research opportunities that suit their needs, fostering clinical trials that are more inclusive, efficient, and patient-centered.
Andreya Fletcher
I’m formerly a nursing assistant who is personally connected to rare disease as my mom is diagnosed with Glanzmann Thrombasthenia which is a rare blood clotting disorder. Through learning from my mother’s experiences and supporting her in her journey, I understand how scary it can be to live with a rare disease. My personal experience combined with my professional experience as a nursing assistant has given me the skills and insight needed to help people affected by rare diseases.
Descargar la mejor aplicación para llevar un diario
Te presentamos Health Story AI, una aplicación personalizada que te permite, más fácilmente que nunca, registrar y compartir los retos diarios únicos a los que se enfrenta cada persona al vivir con una enfermedad rara.
Diario con voz
Solo tienes que hablar y convertiremos automáticamente lo que digas en texto, para que puedas leer fácilmente las entradas de tu diario en cualquier momento
Ver Estadísticas
Obtén información personalizada y fácil de entender basada en los patrones, las tendencias y los temas que se reflejan en tus diferentes entradas del diario
Compartir De forma segura
Comparte tu diario con total tranquilidad con tu familia, amigos y otras personas gracias a nuestros controles de privacidad avanzados
Descargar ahora para aprovechar el poder curativo del diario
UNA RESILIENCIA EXCEPCIONAL
AGENTES DEL CAMBIO EN RARE
Latest From Our Blog
Read the journeys of people who live every day with a rare disease, and learn about the new research and researchers working to create a better future.
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Get in Touch
Reach out now to let us know how we can help you