Outside Resource Organizations

Outside resource links to help U.S. patients, families, and caregivers affected by Superficial siderosis.

Lotsa Helping Hands

“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.”

Patient Advocate Foundation Co-Pay Relief

What is the Patient Advocate Foundation Co-Pay Relief Program?

Patient Advocate Foundation’s (PAF) Co-Pay Relief Program (CPR) provides financial assistance to financially and medically qualified patients, including those insured through federally administered health plans such as Medicare,  for co-payments, co-insurance and deductibles required by a patient’s insurer for pharmaceutical treatments and/or prescription medications prescribed to treat and/or manage his/her disease.


  • Patient must be currently insured and have coverage for the medication(s) for which they seek financial assistance
  • Patient must have a physician-confirmed diagnosis of the disease under which they are requesting financial assistance
  • Patient must reside and receive treatment in the United States
  • Patient’s income must fall below the income guidelines of the fund under which they are requesting financial assistance.  All funds have income guidelines of either 300% or 400% or less of the Federal Poverty Guideline (FPG) with consideration for the Cost of Living Index (COLI) and the number in the household
  • The patient will be informed immediately upon application if they qualify for assistance

National Alliance for Caregiving 

“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.”

The Patient Travel Referral Program

“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.”

Good Days

Deferiprone co-pay assistance for Medicare Part D. Patients must meet income guidelines.

Patient Advocate Foundation

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

Social Security Disability Insurance pays benefits to you and your family members 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.

Social Security Compassionate Allowance

Compassionate Allowances are a way to quickly identify diseases and other medical conditions that, by definition, meet the Social Security standard for disability benefits. These conditions primarily include certain cancers, adult brain disorders, and many rare disorders that affect children. Superficial siderosis is a listed compassionate allowance disorder. Claims must be submitted with definitive proof of your superficial siderosis.

Disabled American Veterans

If your Superficial Siderosis is the result of a service-related injury or surgery, then you may qualify for healthcare or benefits.

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