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X-WR-CALDESC:Events for Patient Worthy
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DTSTART:20230312T070000
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DTSTART;TZID=America/New_York:20230917T160000
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DTSTAMP:20261030T134538
CREATED:20230809T195803Z
LAST-MODIFIED:20230809T195803Z
UID:3487971-1694966400-1694970000@patientworthy.com
SUMMARY:HCU Network America's Classical HCU Patient\, Parent\, Caregiver Online Meetup
DESCRIPTION:Classical HCU Patient\, Parent\, Caregiver Online Meetup\nSeptember 17\, 2023 at 4 PM \nWe will start the meeting with introductions and conversation together\, then move into breakouts. There will be a breakout for Parents/Caregivers and Patients. \nYour facilitators: Diagnosed at the age of 10 with Classical HCU\, Danae’ struggled with the low-protein diet and formula. At 24 years old she suffered a blood clot\, which was the cataylst that she needed to get back on track and seek community support. She first connected with the PKU Community (there was no HCU Network America at that time!). After feeling inspired by the larger low-protein community\, in 2016 she co-founded HCU Network America. She speaks openly about dealing with her history of symptoms which include anxiety\, depression\, OCD\, aggression outburst\, ADD\, sensory issues\, scoliosis\, osteopenia\, lens dislocation\, and of course her blood clot\, in hopes it will help others feel seen in their journey. \nLiz is the mom of Elliott\, an 7-year-old boy in South Carolina who has Classical Homocystinuria. Elliott was diagnosed with HCU at age 2 after suffering from an unexplained illness (which turned out to be blood clots in the brain and stroke)\, which left him fighting for his life. Upon receiving this diagnosis\, Liz found the HCU Network America online and immediately connected with other families living with HCU. She says that HCU Network America has been an invaluable resource and that the connections and relationships that her family has built through the network have been an incredible source of support and knowledge. Liz now serves as the Communications Manager for HCU Network America\, and it is her hope that she can help other families who are living with HCU to feel connected and supported the in the same way that she has. \nTo sign up\, click here.
URL:https://patientworthy.com/event/hcu-network-americas-classical-hcu-online-meetup/
CATEGORIES:Homocystinuria
ORGANIZER;CN="HCU%20Network%20America":MAILTO:hcunetworkamerica@gmail.com
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