Advocacy

Leading advocates and experts share their experiences
The Rare Disease Film Festival

The Rare Disease Film Festival

Daniel DeFabio discusses the Rare Disease Film Festival, a relatively new event showcasing films from around the world which address the challenges of life with a rare disease. The first event was held in Oct of 2017 in Boston, MA.

Defeating MSA (Multiple System Atrophy)

Defeating MSA (Multiple System Atrophy)

Philip Fortier, executive director of Defeat SMA USA, Defeat SMA Canada, and the MSA Awareness Shoe. Multiple System Atrophy (MSA) is a rare, neurodegenerative disorder that largely affects the autonomic nervous system.

Ehlers Danlos Syndrome

Ehlers Danlos Syndrome

Shani Weber, Patient and Community Advisor for the Ehlers Danlos Society recently talked to us about the role this international organization plays in educating people, including those in the medical community about Ehlers-Danlos syndrome (EDS).

Lipodystrophy – A Rare Disease, But Not That Rare

Lipodystrophy – A Rare Disease, But Not That Rare

Andra Stratton, President and co-founder of Lipodystrophy United talks about the foundation and the large increase in individuals being diagnosed with the disease, possibly as a result of the work LU has done to raise awareness of this rare condition.

Mucopolysaccharidosis (MPS) Resource Center

Mucopolysaccharidosis (MPS) Resource Center

Mucopolysaccharidoses (MPSs) are a group of genetic lysosomal disorders in which persons have low levels of specific enzymes that leads to an abnormal accumulation of complex carbohydrates (mucopolysaccharides or glycosaminoglycans).

Podcast Focused on Rare Diseases

Podcast Focused on Rare Diseases

Rare in Common, a podcast hosted by Andra Stratton, regularly posts conversations with leaders in the rare disease community to help them share their stories.

Canada is the Orphan of the Orphans

Canada is the Orphan of the Orphans

That ease of letting the U.S. take care of the work means that Canada is missing out on early patient access, research funding, and biotech investments.

EveryLife Foundation: Its Past, Present, and Future

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.

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