Organization Name: Avery’s Hope
Disease Affiliation: Rare, ultra rare and undiagnosed pediatric GI diseases
Mission: Avery’s Hope raises money and awareness for rare, ultra rare and undiagnosed pediatric GI patient families assisting with out-of-pocket and insurance denied expenses.
What led you to the rare disease community?
Our grandson was diagnosed with Microvillus Inclusion Disease 7 years ago and we had a front row seat to all of the emotional, social and financial strain. We wanted to be able to assist other families with their out-of-pocket and insurance-denied expenses.
What do you think are the areas that are lacking in the community (specific to your org or in general)?
Access and resources that go well beyond insurance covered expenses is truly lacking. Access to Genetic counseling and testing should be a standard of care.
What are some of the pain points?
Lack of access to both information and resources.
What are your areas of expertise?
What is your hope for the future for rare diseases?
Our hope is that all rare patients will have the same access as non rare chronic illnesses to support.
Learn more about the Global Advocacy Alliance.