Red mundial de apoyo de Apoyo
Know Rare proporciona acceso a apoyo, herramientas y conocimientos de los principales líderes e investigadores en enfermedades raras.
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Cómo Ayudamos
We provide support, apps, and information to improve your rare disease journey.
Buscador de investigaciones raras
Get help finding & connecting with rare disease medical centers & clinical trials.
Rare Journaling App
Nuestra nueva aplicación "Healthstory AI" le ayuda a llevar un diario y a obtener información sobre su vida diaria.
Rare Disease Blog
Aprenda y obtenga recursos de expertos, cuidadores y otras personas como usted.
Acerca de nuestra Red de apoyo
Ayudar a conectar a las personas, los investigadores y las comunidades de enfermedades raras
+25,000
Miembros de 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.
¿Necesitas cuidados y apoyo?
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 lo último en Rare aplicación de diario
Presentamos Health Story AI, una aplicación personalizada para ti, que hace más fácil que nunca capturar y compartir los retos diarios únicos de cada persona que vive con una enfermedad rara.
Diario con voz
Sólo tienes que hablar y nosotros convertiremos automáticamente lo que digas en texto, permitiéndote leer fácilmente las entradas de tu diario en cualquier momento.
Ver Perspectivas
Obtenga información personalizada y fácil de leer basada en los patrones, tendencias y temas de las distintas entradas de su diario.
Compartir Con seguridad
Siéntase seguro al compartir su diario con familiares, amigos y otros usuarios, gracias a nuestros avanzados controles de privacidad.
Descargue ahora para aprovechar el poder poder curativo del diario
UNA RESILIENCIA EXCEPCIONAL
AGENTES DE CAMBIO EN RARAS OCASIONES
Últimas noticias de nuestro 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