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#WarriorWednesday Go, Grace!

✨ Exciting News! ✨ We are thrilled to announce the publication of the **first-ever KAND ASO study**! This groundbreaking research marks a significant milestone in the fight against KAND, and it would not have been possible without the incredible collaboration and dedication of

✨Canadian KAND patient, Hendrik, is featured in a news article from Yahoo!Life. Take a look~ ca.style.yahoo.com/it-is-a-never-…

We are incredibly grateful for the partnership and the relentless work being done for KAND at Australia's Murdoch Children's Research Institute (MCRI) ! Their annual report highlights the efforts led by Dr Simran Kaur, a longstanding member of the KIF1A.ORG Research Network and a passionate

Honored to accept the 2024 RARE Champion of Hope in Health Equity award. Recognition that celebrates those making a sig impact in overcoming systemic & organizational challenges contributing to inequities in the rare disease community. It is a tribute to the many who work with me

Congratulations to Wendy Chung and her amazing team on this well-deserved award! No one is more deserving of this recognition. Your relentless pursuit of answers and solutions for our nano-rare community has made a profound impact. We are incredibly grateful for your team's

Happy Thanksgiving, KAND Family! Today, we want to take a moment to share how truly grateful we are for each of you. Together, we’ve built an incredible support network filled with love, strength, and hope. Through the challenges, you remind us of the power of community and

We're kicking off Giving Tuesday for KIF1A.ORG! auctria.events/KIF1A2024Givin… Join us as we raise money to keep our urgent mission alive!

✨ Today is Giving Tuesday!✨ Thanks to your incredible generosity across all donation platforms so far, we’ve raised over $13,000, including matching contributions! THANK YOU SO MUCH! 💙🎉 Please continue to share and donate so we can reach our goal of $30,000 and keep our

✨ UPDATE! ✨ We are absolutely blown away by the outpouring of support and love for our community! Thanks to your incredible generosity, we’ve raised an amazing $25,916, including matching contributions! Your kindness and dedication are truly inspiring. THANK YOU for standing

Our Research Network member, MCRI's Dr. Simran Kaur, leads critical research into KIF1A/KAND, with goals in the short, medium and long-term to provide treatment options and ultimately work towards a cure. Learn more about how this research provides hope for families who are

For the 30 million Americans living with one or more rare diseases, steady federal support for robust biomedical research and stability at national public health agencies are essential to advancing lifesaving research and public health initiatives. This weekend's removal of key

“We must ensure patients suffering from rare and chronic diseases have access to lifesaving medications for years to come, By incentivizing innovation in breakthrough treatments, the MINI Act is a win for patients, a win for breakthrough scientific research, and a win for common

🧬Today, on KIF1A Day, we want to extend our heartfelt gratitude to n-Lorem Foundation for bringing hope to the KIF1A community. n-Lorem’s commitment to developing individualized RNA-based therapies for patients with ultra-rare genetic diseases is truly life-changing. Their innovative

🌟 Today, on KIF1A Day, we celebrate the incredible progress our community is making — and the people who are helping to lead the way. At KIF1A.ORG, we are honored to work alongside a remarkable network of researchers, scientists, and clinicians who are dedicated

The first KAND-focused speech and communication study: led by Professor Angela Morgan and Lottie Morison at Murdoch Children's Research Institute (MCRI), joined by Dr. Wendy Chung, KIF1A.ORG's Dylan Verden, and 44 KAND families! nature.com/articles/s4143…

rarediseases.org/driving-policy… 💥Medicaid and Lifesaving Waiver Programs Are Under Threat A new bill backed by Trump proposes massive cuts to Medicaid funding—putting essential care and services for millions of families, including ours, at risk. ✅Take 2 minutes to make your voice