Dear KIF1A Community, Equipment deemed medically necessary should never be inaccessible for our friends diagnosed with KIF1A Associated Neurological Disorder (KAND). Thanks to a generous donation made directly to support the creation of this much needed program, KIF1A.ORG can now provide additional support and extend a helping hand to those diagnosed with KAND. What Can…
Read More#ScienceSaturday: March 19, 2022
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dominique Lessard and Dr. Dylan Verden of KIF1A.ORG summarize newly published KIF1A-related research. From February 5 – April 16, 2022, a team of talented students from Columbia University’s M.A. in Biotechnology program is taking over the Rare Roundup section,…
Read More#ScienceSaturday: March 12, 2022
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dominique Lessard and Dr. Dylan Verden of KIF1A.ORG summarize newly published KIF1A-related research. From February 5 – April 16, 2022, a team of talented students from Columbia University’s M.A. in Biotechnology program is taking over the Rare Roundup section…
Read More#ScienceSaturday: March 5, 2022
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dominique Lessard and Dr. Dylan Verden of KIF1A.ORG summarize newly published KIF1A-related research. From February 5 – April 16, 2022, a team of talented students from Columbia University’s M.A. in Biotechnology program is taking over the Rare Roundup section…
Read MoreFebruary 2022 Highlights
This Rare Disease Day catch up on exciting announcements from KIF1A.ORG that strengthen our community and accelerate our path to clinical trials, and meet some of the relentless families who are using their voice to drive awareness and empower progress for the KIF1A and rare disease community!
Read MoreKIF1A.ORG Initiates KOALA Study with the Chung Lab to Accelerate Path to Clinical Trials
Dear KIF1A.ORG community, On Rare Disease Day 2022, KIF1A.ORG is announcing a new initiative with our collaborators at Columbia University. The KOALA Study will accelerate discovery and development of medicines for KIF1A Associated Neurological Disorder by developing and identifying standardized tools and assessments to support approval of future KAND therapeutics. Since 2017, we have been…
Read MoreA Collaboration of Rare + Rare: #ScienceSaturday, February 26, 2022
In anticipation of Rare Disease Day 2022, this week we are featuring a very special collaborative edition of #ScienceSaturday with our friends from the Complex Lymphatic Anomalies community! Our rare diseases may be drastically different, but find out what we have in common and how rare disease communities can drive research for better care and…
Read More#ScienceSaturday: February 19, 2022
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dominique Lessard and Dr. Dylan Verden of KIF1A.ORG summarize newly published KIF1A-related research. From February 5 – April 16, 2022, a team of talented students from Columbia University’s M.A. in Biotechnology program is taking over the Rare Roundup section…
Read More#ScienceSaturday: February 12, 2022
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dominique Lessard and Dr. Dylan Verden of KIF1A.ORG summarize newly published KIF1A-related research. From February 5 – April 16, 2022, a team of talented students from Columbia University’s M.A. in Biotechnology program is taking over the Rare Roundup section…
Read More#ScienceSaturday: February 5, 2022
#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dominique Lessard and Dr. Dylan Verden of KIF1A.ORG summarize newly published KIF1A-related research. From February 5 – April 16, 2022, a team of talented students from Columbia University’s M.A. in Biotechnology program is taking over the Rare Roundup section…
Read MoreCZI Awards KIF1A.ORG $150,000 and Another Year of Rare As One
Hello KIF1A.ORG Community, We’re starting Rare Disease Month with fantastic news! The Chan Zuckerberg Initiative (CZI) awarded KIF1A.ORG an additional $150,000 in capacity-building funds and the critical opportunity to engage with the Rare As One Network for one more year! Thank you CZI for partnering with the KIF1A community by including us, investing in us,…
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