Come aiutiamo
We provide support, apps, and information to improve your rare disease journey.
Ricerca rara
Get help finding & connecting with rare disease medical centers & clinical trials.
Rare Journaling App
La nostra nuova app "Healthstory AI" vi aiuta a tenere un diario e a vedere gli approfondimenti sulla vita quotidiana.
Rare Disease Blog
Imparate e ottenete risorse da esperti, assistenti e altri come voi.
Informazioni sulla nostra Rete di supporto
Contribuire a mettere in contatto le persone, i ricercatori e le comunità che si occupano di malattie rare
+25,000
Membri affetti da malattie rare
+300
Centri medici in tutto il mondo
50+
Organizzazioni di pazienti
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, mamma di Diego
con diagnosi di acidemia propionica
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.
Hai bisogno di assistenza e sostegno?
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.
Scaricare il massimo della rarità App per il diario
Presentiamo Health Story AI, un'applicazione personalizzata per voi, che rende più facile che mai catturare e condividere le sfide quotidiane di ogni persona che convive con una malattia rara.
Diario con voce
Basta parlare e noi trasformeremo automaticamente ciò che dici in testo, permettendoti di leggere facilmente le tue annotazioni sul diario in qualsiasi momento.
Visualizza Approfondimenti
Ottieni approfondimenti personalizzati e di facile lettura basati sui modelli, le tendenze e i temi presenti nelle varie voci del tuo diario.
Condividi In modo sicuro
Condividi il tuo diario con familiari, amici e altri in tutta sicurezza, grazie ai nostri controlli avanzati sulla privacy.
Scarica ora per sfruttare il potere di guarigione potere di guarigione del diario
UNA RESILIENZA ECCEZIONALE
CAMBIAVALUTE IN RARI
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.
Ultime notizie Stampa
Get in Touch
Reach out now to let us know how we can help you