Many thanks to Destiny and Bill Haggett, Chansen and the rest of their family for helping to spread the word about the importance of rare disease advocacy on this Rare Cancer Day. Destiny was instrumental in getting Coral Springs and Coconut Creek, Florida to proclaim Sept. 30 as “Rare Cancer Awareness Day” in those cities. For rare diseases like fibrolamellar, state and local activities are critical to build awareness about the impact of rare cancers on families, and to encourage communities and the government to marshal the resources necessary drive research into all rare diseases.

Click here to read the full story about the Coral Springs proclamation.