While there are estimated to be more than 7,000 rare diseases, The National Economic Burden of Rare Disease Study conducted by the Everylife Foundation of Rare Diseases concluded that individuals affected by 379 identified diseases incurred direct and indirect medical costs amounting to $966 billion in 2019, including expenditures for inpatient hospital or outpatient care, physician visits, prescription medications, and durable medical equipment. This estimate also encompasses costs of healthcare services not covered by insurance, including experimental treatments, alternative or non-traditional treatments such as acupuncture, as well as medical foods and dental surgeries. Non-medical costs include paid daily care, necessary home and vehicle modifications, transportation costs, home schooling, missed schooling, and special education.
Understanding the financial burden associated with medical complexities and specialized medical needs for patients diagnosed with Trisomy 18, families facing economic hardship due to Trisomy 18 can request assistance from the E.WE Foundation by submitting this form. Please answer ALL questions truthfully.
Please be advised that submitting this form is not a guarantee of approval or assistance. Anyone previously assisted must wait six (6) months before submitting another request.
STRIPE Assistance Request