[GUEST ACCESS MODE: Data is scrambled or limited to provide examples. Make requests using your API key to unlock full data. Check https://lunarcrush.ai/auth for authentication information.] [@RecordatiD](/creator/twitter/RecordatiD) "On Rare Disease Day we are proud to share our Rare Disease Patient Community Charter the result of a yearlong collaboration to ensure patients remain central to our planning thinking and actions. Developed with our patient ambassadors across Europe and beyond and with input from Patient Advocacy Groups representing diverse rare conditions we co-created a charter reflecting their views expectations and ambitions. Built on four key pillars it formalises our commitment to the rare disease community holding us accountable and guiding our internal operations and external interactions with all" [X Link](https://x.com/RecordatiD/status/1895504916250284398) [@RecordatiD](/creator/x/RecordatiD) 2025-02-28T16:02Z XXX followers, XXX engagements "Ahead of @rarediseaseday on February 28th were sharing the story of Reza a 13-year-old living with cystinosis - a rare condition that causes the amino acid cystine to build up in organs like the kidneys and eyes. Despite the challenges Reza is full of optimism and big dreams. He loves dancing reading and aspires to become an actor I will try my best to make those around me happy Reza shares. His story is part of a global initiative by EURORDIS and Rare Disease Day to highlight the strength and resilience of people living with rare diseases. This Rare Disease Day lets celebrate Reza and the" [X Link](https://x.com/RecordatiD/status/1895141234491937233) [@RecordatiD](/creator/x/RecordatiD) 2025-02-27T15:57Z XXX followers, XXX engagements "📢 Retrouvez-nous au symposium SFE 2025 de Recordati Rare Diseases "Prise en charge de l'acromgalie et du syndrome de Cushing : savoir aller au-del des hormones 📅 Le jeudi XX septembre 2025 de 18h 19h30 🎤 Modr par Pr. Jacques Young #Symposium #Maladiesrares #SFE #Cushing#Acromgalie" [X Link](https://x.com/RecordatiD/status/1970838386911944723) [@RecordatiD](/creator/x/RecordatiD) 2025-09-24T13:11Z XXX followers, XX engagements
[GUEST ACCESS MODE: Data is scrambled or limited to provide examples. Make requests using your API key to unlock full data. Check https://lunarcrush.ai/auth for authentication information.]
@RecordatiD
"On Rare Disease Day we are proud to share our Rare Disease Patient Community Charter the result of a yearlong collaboration to ensure patients remain central to our planning thinking and actions. Developed with our patient ambassadors across Europe and beyond and with input from Patient Advocacy Groups representing diverse rare conditions we co-created a charter reflecting their views expectations and ambitions. Built on four key pillars it formalises our commitment to the rare disease community holding us accountable and guiding our internal operations and external interactions with all"
X Link @RecordatiD 2025-02-28T16:02Z XXX followers, XXX engagements
"Ahead of @rarediseaseday on February 28th were sharing the story of Reza a 13-year-old living with cystinosis - a rare condition that causes the amino acid cystine to build up in organs like the kidneys and eyes. Despite the challenges Reza is full of optimism and big dreams. He loves dancing reading and aspires to become an actor I will try my best to make those around me happy Reza shares. His story is part of a global initiative by EURORDIS and Rare Disease Day to highlight the strength and resilience of people living with rare diseases. This Rare Disease Day lets celebrate Reza and the"
X Link @RecordatiD 2025-02-27T15:57Z XXX followers, XXX engagements
"📢 Retrouvez-nous au symposium SFE 2025 de Recordati Rare Diseases "Prise en charge de l'acromgalie et du syndrome de Cushing : savoir aller au-del des hormones 📅 Le jeudi XX septembre 2025 de 18h 19h30 🎤 Modr par Pr. Jacques Young #Symposium #Maladiesrares #SFE #Cushing#Acromgalie"
X Link @RecordatiD 2025-09-24T13:11Z XXX followers, XX engagements
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