Resources and Links
“Lotsa Helping Hands is a free caregiving coordination web service that provides a private, group calendar where tasks for which a caregiver needs assistance can be posted. Family and friends may visit the site and sign up online for a task. The website generates a summary report showing who has volunteered for which tasks and which tasks remain unassigned. The site tracks each task and notification and reminder emails are sent to the appropriate parties.”
“Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance is dedicated to improving quality of life for families and their care recipients through research, innovation, and advocacy.”
“A program of Mercy Medical Angels provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.”
“Ferriprox Total Care is a comprehensive support program that provides one-stop assistance in accessing Ferriprox® (deferiprone) 500mg tablets, for oral use.”
Payment assistance program from the manufacturer of Ferriprox, ApoPharma
Ferriprox co-pay assistance for Medicare Part D. Patients must meet income guidelines.
Offering help and resources for co-pay assistance, underinsured and the uninsured.
Patient Advocate Foundation is a national 501 (c)(3) non-profit organization which provides professional case management services to Americans with chronic, life threatening and debilitating illnesses.
PAF case managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis also assisted by doctors and healthcare attorneys.
Social Security Disability Insurance pays benefits to you and members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes. Supplemental Security Income pays benefits based on financial need and a total household income under the threshold amount.
Compassionate Allowances are a way to quickly identify diseases and other medical conditions that, by definition, meet Social Security’s standards for disability benefits. These conditions primarily include certain cancers, adult brain disorders, and many rare disorders that affect children.
If your Superficial Siderosis is the result of a service-related injury or surgery, then you may qualify for healthcare or benefits.