Too Rare to Care Documentary
Lainey Moseley, rare disease mother and documentary film maker, is creating an impactful new documentary, Too Rare to Care. The documentary will look at the lives of families who have taken on the hurculean task to create treatments for their own children’s rare diseases themselves
Collectively rare disease affects more than 3000 million people worldwide. That’s more than cancer and AIDS put together; yet this is an area of medicine and research that receives little funding and precious little attention. Sadly 50% of all those affected by rare disease are children, and so serious are their conditions, that one in three will not live long enough to see their fifth birthday. Something needs to change.
While Walking barefoot down the east coast of the United States, fundraising for Hope for Hasti, Chris met with Lainey in a roadside coffee shop near Philadelphia to discuss the project. Both Lainey and Chris agreed that taking the issue of rare disease out of the closet and bringing it into the mainstream could only be a good thing.
The film takes a candid look into the lives of these families, their struggles, their fears and their relentless pursuit of hope for their children and their futures. With a release date forecasted for Feb 2024 this is still some filming to be done and the stories of these families are still far from finished. To watch the trailer, visit www.TooRareToCare.com