*** Rare Disease Day NF2 Open-Access Tissue Bank Kickoff ***
February 29 is international RARE DISEASE DAY!! We are thrilled to announce the start of the first ever open-access NF2 tissue bank in collaboration with Children's Brain Tumor Tissue Consortium!!! We are one step closer to finding a cure for NF2 but we need your help!! NF2 BioSolutions (run 100% volunteers patient, family, and friend volunteers) needs your help to support this first NF2 Tissue Bank. The cost is roughly $50,000 per year to manage it (receive/store/analyze/share with labs researchers), please help us finance it so we can advance research at a brisk pace!
On April 3rd 2020 in Boston, NF2 BioSolutions is uniting 44 researchers/clinicians to kick off the NF2 Tissue/Cell bank. We are enlisting NF2 surgeons (to remove tumors) and research labs (that need tumors) to team up and benefit from a large number of NF2 tissues/cells. For more detailed information about our initiative : https://nf2biosolutions.org/gene-therapy-and-nf2/open-access-nf2-tissues-cells-bank/
NF2 brain and spine tumors cause deafness, blindness, paralysis, and even death by pressing on the brains of our children and loved ones. Nf2 is a rare genetic disorder that can strike anyone, regardless of gender, race, location, or heritage.
Mission: We are a non-profit organisation seeking a cure or preventative treatment for NF2 by vigorously supporting and advancing existing and next-generation biomedical technologies, such as gene therapy and immunotherapy. This could include sponsorship of research and development of therapies.
Vision: We envision a world where those living with NF2 will have access to cutting-edge solutions to live full and productive lives, free from daily physical and emotional pain or suffering.