HLH Heroes Foundation Not for Profit
Home | HLH Heroes Foundatio
871834069
Saint Louis, MO 63128 USA
hlh-heroes.org
HLHHF
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Novinky
Thank you to Livy Rae's Journey with HLH’s team for the 5k! We appreciate the support, the love, and the silly costumes!!! 💙 (fb)
**Warrior Wednesday** Warrior’s Name: Adriana Diagnosis: Secondary HLH Location of Treatment: Cleveland Clinic Children's Hospital Story told by family: “Adriana had a cough on our visit to Puerto Rico for Christmas 2024 we took her to a med center they said she had congestion a couple day later she complained of back pain and abdominal pain we took her to the ED they said she had pneumonia and her liver was inflamed because she was fat. Flew back home and took her to the Cleveland clinic they said she had myocarditis and started treating for it. Adriana's condition declined and a month intro her illness they determined she had HLH. They started her on Gamifant and it was bringing down her inflammation levels but a week later her organs were too damaged and on February 7,2025 Adriana went to heaven.” (fb)
Poslední komentáře
❤️ So grateful for organizations like the HLH Heroes Foundation! Together, we can make sure that no one has to fight this battle alone. Let's spread the word and support our HLH warriors! #HLHHeroes #SupportCommunitydetail |
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🌟 Amazing work, HLH Heroes Foundation! Your dedication to supporting families affected by HLH is truly inspiring. Let's continue to uplift and empower each other in this fight! 💪✨ #NoOneFightsAlone #HLHAwarenessdetail |
Poslední diskuze
What are some effective strategies for raising awareness about HLH and the challenges faced by those living with this rare disease?Odpovědí: 3, Naposledy před 1 den detail |
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How can we better engage and support families who are newly diagnosed with HLH to ensure they feel part of our community from the start?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
4.5
Saint Louis
O společnosti
- E86 -
No one fights alone. Help us support those fighting HLH a rare lifethreatening autoimmune disease. Our Story Mission and Vision Programs Events and Assistance Volunteer Participate or Donate Who We Are The HLH Heroes Foundation is a 501c3 nonprofit organization formed in 2021 by a group of HLH caregivers who wanted to honor their warriors by building a community of support. What We Do Being diagnosed with a rare disease is hard.
Služby pacientům – Zábava, rekreace
