In this week's storytime, yannick-robin tells us about what the experience of meeting someone else with the same rare disease as him was like, including a portion of the speech he watched that person give, during the Living Rare Summit in Washington D.C., where they met. Thank you to the National Organization for Rare Diseases for allowing me to share her wonderful words with everyone. <a href="https://www.yannickmirko.com/post/meeting-someone-with-my-rare-disease" rel="noopener noreferrer" target="_blank">Read English transcript, here.</a> - En la hora del cuento de esta semana, yannick-robin nos cuenta cómo fue la experiencia de conocer a otra persona con la misma enfermedad rara que él, incluida una parte del discurso que vio dar a esa persona, durante la Cumbre Living Rare en Washington D.C., donde se conocieron. Gracias a la Organización Nacional de Enfermedades Raras por permitirme compartir sus maravillosas palabras con todos. <a href="https://www.yannickmirko.com/es/post/conociendo-a-alguien-con-mi-enfermedad-rara" rel="noopener noreferrer" target="_blank">Lea la transcripción en Español, aquí.</a> <hr> Hosted on Acast. See <a style='color:grey;' target='_blank' rel='noopener noreferrer' href='https://acast.com/privacy'>acast.com/privacy</a> for more information.

Rare Disease Daily #13: 17q12 Deletion Syndrome

A series where BIPOC, Disabled, and TGNC artist yannick-robin eike mirko invites conversation on the causes closest to his heart, including the de-colonization of Puerto Rico, advocacy for rare diseases, and equality for TGNC people.  Hosted on Acast. See acast.com/privacy for more information.