ASXL RARE RESEARCH ENDOWMENT FOUNDATION

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Supporting research and education to improve the quality of life for those living with ASXL-related disorders #BohringOpitz #ShashiPena and #BainbridgeRopers We support research and education to improve the lives of families living with ASXL syndromes.

Founded

2018

Facebook

1424

X (Twitter)

151

Address

Portland

Address: PO Box 4662, PortlandWeb: Sign in to see organisation websiteFacebook: arrefoundationX (Twitter): arrefoundationEmployees: 1Volunteers: 50Revenue: 283786ICO: 823890665

ASXL Rare Research Endowment Foundation Supporting research and improving care for ASXL syndromes Were a familyled organization supporting research to increase the understanding of the ASXL gene family and improve care for those living with disorders related to the ASXL genes. Research Questions in ASXLRelated Disorders survey Deadline extended to Monday March 31 2025. The ARRE Foundation invites you to take part in an important research survey that has been guided by a dedicated team of ASXL parents and researchers over the last year. Your insights are invaluable to prioritizing the unanswered questions about ASXLrelated disorders and driving meaningful research forward.

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Lucille

🌟 Thank you, ASXL RARE RESEARCH ENDOWMENT FOUNDATION, for dedicating yourselves to improving the lives of families affected by ASXL syndromes! Your efforts in research and education are truly making a difference! 💖 #ASXLCommunity

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Benjamin

1. What strategies can the ASXL Rare Research Endowment Foundation implement to increase participation in the research survey, especially among families who are newly diagnosed?

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Martin

2. How can the ASXL community leverage advancements in genetic research to enhance care and support for individuals living with ASXL-related disorders?

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Olga

💬 Just filled out the research survey! It's empowering to have a voice in the ASXL community and to contribute to vital research. Together, we can uncover answers and improve care for our families! 🌈 #ASXLAdvocacy

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