EveryLife Foundation: Its Past, Present, and Future

At the BIO International Convention recently held in Philadelphia, PA, we talked with Christina Hartman, Senior Director of Advocacy & Policy for the EveryLife Foundation for Rare Diseases about the origins of this amazing organization.

Newborn Screening Saves Lives Reauthorization Act of 2019

At the BIO International Convention recently held in Philadelphia, PA, we talked with Christina Hartman, Senior Director of Advocacy & Policy for the EveryLife Foundation for Rare Diseases about some of the efforts the non-profit organization is doing to reduce the time to diagnosis, including their advocacy work focused on newborn screening.

2030 Goal: Universal Health Coverage for Rare Diseases

Rare Disease International (RDI) is a global alliance of rare disease patient organizations designed to be an international voice for the rare disease community. One of its key initiatives is to include rare diseases in the Universal Health Coverage being developed by the United Nations (UN) for the year 2030.

Appendix Cancer Pseudomyxoma Peritonei (ACPMP) Research Foundation

Karolyn Lewandowski is the Chief Operating Officer & General Counsel of the Appendix  Cancer Pseudomyxoma Peritonei (ACPMP) Research Foundation, a non-profit organization focused on sponsoring research towards pseudomyxoma peritonei, appendix cancer, and related peritoneal surface malignancies. 

Fibromuscular Dysplasia (FMD) Registry

Jeffrey W Olin, DO, Professor of Medicine at the Icahn School of Medicine at Mount Sinai, discusses the Fibromuscular Dysplasia Society of America (FMDSA) and it’s FMD Registry.

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