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サマリー
あらすじ・解説
Feauturing Cristina Rosa Vargas, Strong & Rare Mama, Paralegal, and Award winner of the Sonofi 2022 torch awards. She has been featured in Rare Revolution magazine and had a pending article with Upstate medical. She is a mama into civic action as she spreads awareness of CLN2 disease. She is working on a petition to support FDA-approved medication for her son's diagnosis. As she continues to be a strong RDLA advocate she is striving to become a lawyer to support the Rare Disease Community.
Show highlights:
- Her Son's Journey with CLN2 and how she took steps to be a voice for her son and many other families
- Her impact award recognition and her dedication to continuing advocating
- Purpose in life as a parent and professional
Learn more about the work Cristina is doing by visiting the following links
- Link to live Sanofi watch party: Youtube Video,
- Link to campaign: Here, Link to FDA citizen petition docket,
- Featured on Rare Revolution magazine
To stay connected, visit me on Instagram (@Strongandrareparenting), and/or send me an email at info. strongeandrareparents.com
Support this Podcast: https://anchor.fm/strongandrareparentin
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