Blogs

A Momentous Moment in Mississippi

June 20, 2024

Global Genes asked Global Advocacy Alliance members to share their successes – whether it is meeting an organizational goal, kicking off a campaign or event, conducting great work in their community, participating at a summit, or collaborating with another organization. See what Mississippi Metabolics Foundation is celebrating!

Shannah and Emmalyn Hudson
Mississippi Metabolics Foundation

For six years, I worked with many advocates, disease organizations, and legislators in hopes of passing legislation in Mississippi to establish a Rare Disease Advisory Council. This year I was privileged to work alongside the National Organization for Rare Disorders (NORD) in getting this bill passed (SB 2156) to create the MS Rare Disease Advisory Council. The RDAC will comprise a diverse group of rare disease stakeholders including patients, caregivers, healthcare providers, researchers, and members of pharmaceutical and health insurance companies. Their expertise will be an asset to the entire state, creating a platform to educate the public, state agencies, healthcare providers, and Legislature about the medical needs of those with rare diseases and make policy recommendations that improve rare disease patient access to critical health care services.

On April 16, 2024, we attended a bill signing with Governor Reeves to celebrate this momentous day for our rare patient community.

MMF Shares Their Success on Facebook

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