Individuals and families living with MTM & CNM: Please take this “THE NATIONAL BURDEN OF RARE DISEASE SURVEY” by Sunday, July 19th! EveryLife Foundation for Rare Diseases is collecting essential data across all rare diseases that will help demonstrate the public health crisis of rare disease, inform policy proposals, and work to improve the lives of those living with rare diseases and our families. Please help make sure our MTM & CNM voices and experiences are included! To complete the survey, click here.
(*The use of the word “burden” is an historical and economic-based term used widely within the healthcare industry. While MTM-CNM Family Connection believes it is time to culturally shift the use of this word in these discussions and advocacy, we fully support this effort to collect this essential data, on the COST of rare disease, in order to drive improvements for rare diseases. We never want our members living with a rare disease to interpret that their lives or care involved to live, is a “burden”. We will continue to advocate for the use of alternative language to re-frame these discussions. Let’s focus the conversation and resolve to improve the “inequities, injustices, biases, and barriers” that lead to increased costs for those living with rare diseases, rather than the “burdens” rare diseases bring. This data collected by the EveryLife Foundation will help the Rare Disease community to do that. Please spend a few moments to complete now!)