At the heart of Always in Hope, are the emotional first-hand accounts of those who have been, and continue to be, impacted and motivated by rare disease.

The film uses letters, diaries, speeches and journalistic accounts to reveal the unheralded stories of rare patients and their families.

These dramatic and emotional stories come to life through dramatic readings by the patients themselves as well as American arts and culture celebrities who support the fight against rare disease.

Footage of, and from, the community itself will be shot and gathered to illustrate “rare” life in all its facets while interviews with community leaders, healthcare professionals, policy-makers and influencers place the story firmly within the social context of the healthcare system and the status quo.

Conversely, Always in Hope will provide a glimpse into the future and “what’s possible” by including interviews with, and evidence from, world-class entrepreneurs, data scientists, inventors and thought leaders who are working to revolutionize medicine.

Collectively this tapestry will examine from a real-life perspective, why the grass roots rare community movement and game-changing visionaries play crucial roles in the advancement of diagnosis and treatment for us all.