Nehmen Sie an einem herzlichen Gespräch teil, das die Erfahrungen von Familien teilt, die mit seltenen genetischen Syndromen umgehen. Entdecken Sie inspirierende Geschichten von Resilienz und Triumph.
Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples
40 mins • Jan 9, 2025
Charts
- 165NEW
'/%3e%3cpath%20d='M74.965,77.269%20C74.795,75.733%2074.283,74.624%2073.259,73.6%20C71.339,71.595%2067.968,70.272%2064,70.272%20C60.032,70.272%2056.661,71.552%2054.741,73.6%20C53.76,74.667%2053.205,75.733%2053.035,77.269%20C52.693,80.256%2052.907,82.816%2053.248,86.955%20C53.589,90.88%2054.229,96.128%2055.04,101.419%20C55.637,105.216%2056.107,107.264%2056.533,108.715%20C57.259,111.104%2059.861,113.152%2064,113.152%20C68.139,113.152%2070.784,111.061%2071.467,108.715%20C71.893,107.264%2072.363,105.216%2072.96,101.419%20C73.771,96.085%2074.411,90.88%2074.752,86.955%20C75.136,82.816%2075.307,80.256%2074.965,77.269%20z'%20fill='%23FFFFFF'%20id='XMLID_657_'/%3e%3cpath%20d='M74.496,55.509%20C74.496,61.312%2069.803,66.005%2064,66.005%20C58.197,66.005%2053.504,61.312%2053.504,55.509%20C53.504,49.707%2058.197,45.013%2064,45.013%20C69.803,45.013%2074.496,49.749%2074.496,55.509%20z'%20fill='%23FFFFFF'%20id='XMLID_655_'/%3e%3cpath%20d='M63.872,14.165%20C39.381,14.251%2019.328,34.133%2018.987,58.624%20C18.731,78.464%2031.403,95.445%2049.109,101.675%20C49.536,101.845%2049.963,101.461%2049.92,101.035%20C49.707,99.499%2049.451,97.963%2049.28,96.427%20C49.195,95.872%2048.853,95.445%2048.384,95.189%20C34.389,89.088%2024.619,75.051%2024.789,58.795%20C25.003,37.461%2042.411,20.096%2063.701,19.925%20C85.504,19.755%20103.296,37.419%20103.296,59.179%20C103.296,75.264%2093.568,89.088%2079.701,95.189%20C79.189,95.403%2078.848,95.872%2078.805,96.427%20C78.592,97.963%2078.379,99.499%2078.165,101.035%20C78.08,101.504%2078.549,101.845%2078.976,101.675%20C96.512,95.531%20109.099,78.805%20109.099,59.179%20C109.013,34.347%2088.747,14.123%2063.872,14.165%20z'%20fill='%23FFFFFF'%20id='XMLID_653_'/%3e%3cpath%20d='M62.848,29.099%20C46.891,29.696%2034.091,42.88%2033.877,58.837%20C33.749,69.333%2038.997,78.635%2047.061,84.139%20C47.445,84.395%2048,84.096%2048,83.627%20C47.872,81.792%2047.872,80.171%2047.957,78.464%20C48,77.909%2047.787,77.397%2047.36,77.013%20C42.453,72.405%2039.467,65.835%2039.637,58.581%20C39.979,45.781%2050.261,35.371%2063.061,34.859%20C76.971,34.304%2088.405,45.483%2088.405,59.221%20C88.405,66.219%2085.419,72.533%2080.683,77.013%20C80.299,77.397%2080.085,77.909%2080.085,78.464%20C80.171,80.128%2080.128,81.749%2080.043,83.584%20C80,84.053%2080.555,84.395%2080.981,84.096%20C88.917,78.677%2094.165,69.504%2094.165,59.179%20C94.208,42.197%2080,28.416%2062.848,29.099%20z'%20fill='%23FFFFFF'%20id='XMLID_651_'/%3e%3c/g%3e%3c/svg%3e)
Neueste Folgen
Jan 9, 2025
Transforming Pediatric Rare Disease Research: Dr. Ramin Eskandari on Neurosurgery, Biorepositories, and Empowering Families and Medical Teams to Save Residual Samples
40 mins
Jan 2, 2025
Eight Years of Searching: A Determined Family’s Quest to Cure an Ultra-Rare CLCN6 Mutation with Kristin & Paul Purdy
32 mins
Dec 19, 2024
Chasing Glimmers - From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum - with Megan Gillet
36 mins
Dec 12, 2024
The Gift of Grace: A Holiday Heart-to-Heart for Caregivers
11 mins
Nov 27, 2024
Grateful Reflections for Epilepsy Awareness Month: Parents Share Love, Lessons, and Insights from the Dravet Syndrome Community
E249 • 157 mins
Sprache
Englisch
Land
Kroatien
Feed Host
Website
Feed
Request an Update
Updates may take a few minutes.