The Nord Summit 2024 (https://nordsummit.org/) took place on October 22-24 in Washington DC, joining over 900 patient leaders, researchers and scientists, healthcare advocates, pharma and biotech innovators, government agencies, and others to tackle the most pressing issues facing the rare disease community.
National Organization for Rare Diseases (https://rarediseases.org/) is a mission-driven nonprofit improving the health and well-being of people with rare diseases by driving advances in care, research, and policy. Since 1983, NORD has been a national steward and a steadfast partner helping those who battle and care for rare diseases feel seen, heard, supported and connected.
This year, the ABL+ Foundation was represented by Yoyo Benchetrit, a Caltech undergraduate studying biology and chemistry who has been working closely with us. Paul Biderman attended the event in 2022 and 2023 and realized that there is a lot of work to be done.
One of the issues to be addressed is that vitamins are not considered medication in the USA. ABL patients spend thousands of dollars a month on vitamins because insurance companies say they are dietary supplements and don’t cover them. There are around 7,000 known rare diseases worldwide and there is no treatment for 98% of them. There is a treatment for ABL, but some families can’t afford it.
A great reason why we have the summit is that patient representatives can say exactly what they need. Paul says NORD advocates for patients, pushes research, sets up FDA listening channels, among other important roles.
Pamela Gavin – Chief Executive Officer, NORD – “The Breakthrough Summit is an opportunity to bring all the different stakeholders that really have an impact on patients’ lives together to solve really tough, challenging problems that we can’t do by ourselves.”