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Additional Resources

Caregiving/Care Partnering Toolkits and Information:

  • Rare Caregivers Guidebook - The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illness. - The Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts.

  • Good Decisions Are The Best Medicine - Global Genes Edition - How to Work With Your Doctor to Optimize Outcomes

  • Supporting Caregiver Decision-Making -  finding ways to support caregivers in their decisions and empowering them to feel confident in those decisions is critical to caregiver well-being.

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Organizations:

  • FAMILY RESOURCE CENTERS NETWORK OF CALIFORNIA 

  • DHCS Caregiver Resources

  • California Caregiver Resource Center

  • LA Caregiver Resource Center

  • Angel Aid - Connect with other Rare Caregivers, learn the tools of self-care, and be listened to without judgment

  • Caregiver Action Network - family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, diseases, or the frailties of old age.

  • Courageous Parents Network - a non-profit organization that orients and empowers parents and others caring for children with serious illnesses by providing resources and tools that reflect the experience and perspective of other families and clinicians

  • The National Alliance for Caregiving -  a non-profit coalition of national organizations that share a vision of a society that values, supports, and empowers family caregivers to thrive at home, work, and life. Its mission is to build partnerships in research, advocacy, and innovation to make life better for family caregivers.

  • Family Caregiver Alliance -  provides services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s, and other types of dementia. Our services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers.

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Mental Health & Support:


Financial Resources:  
We encourage you to check out all of these options to see what opportunities will suit you. We highly recommend connecting with the Patient Advocate Foundation (link below) case management assistance program.


Global Genes has a number of internal resources that may be helpful to you, including:

 

General:

  • The Assistance Fund (TAF) - helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses.

  • Accesia Health - Provides financial assistance to pay for prescriptions, medical treatments, and insurance. Program services include - healthcare education, specialized legal services, and case management.

  • RARE Care - assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

  • PAN Foundation - helps underinsured people with life-threatening, chronic, and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability. 

  • Finding Financial Assistance for Rare Diseases in the US - PAN Foundation

  • NORD - Patient Assistance Programs

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Medical Care:

  • Patient Advocate Foundation -  Copay Relief - provides direct financial assistance to insured patients who meet certain qualifications to help them pay for the prescriptions and/or treatments they need. 

  • National Association of Free & Charitable Clinics  (NAFC) mission is solely focused on the issues and needs of medically underserved people throughout the U.S. and the more than 1,400 Free and Charitable Clinics and Charitable Pharmacies that serve them. NAFC programs provide a wide range of support to our members and in turn patients through funding, education and training, advocacy, standards, disaster relief, and more.

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Medications:

We recommend calling around to various pharmacies in your area to inquire about pricing. Costs can differ greatly from pharmacy to pharmacy. 

  • NeedyMeds - programs that help people with medication and healthcare costs, information about government programs, low-cost medical and dental clinics, and prescription assistance. It also has disease-specific financial aid programs. You can contact them directly at 800-503-6897.

  • Medicine Assistance Tool (MAT) - The Pharmaceutical Research and Manufacturers of America (PhRMA) created a tool that allows patients, caregivers, and healthcare providers to search for financial assistance resources offered through various biopharmaceutical programs to help cover the cost of medications: 

  • Medicare - Pharmaceutical Assistance - Some pharmaceutical companies offer programs to help pay for prescriptions for people in a Medicare Drug Plan (Part D)

  • GoodRX - gathers current prices and discounts to help you find the lowest cost pharmacy for your prescriptions.

  • RxAssist - Patient Assistance Program Center - helps people search for programs set up by drug companies that offer free or discounted drugs to uninsured individuals who cannot afford their medication.

  • RxOutreach is a non-profit mail-order pharmacy that provides affordable medication to underserved individuals. A list of medications and prices can be found here. For more information, call 888-796-1234.

  • RX Hope - a helping hand to people in need in obtaining critical medications that they would normally have trouble affording.  They act as your advocate in making the patient assistance program journey easier and faster by supplying vital information and help.

  • Mark Cuban Cost Plus Drug Company - offers hundreds of common (and often life-saving) medications at the lowest possible prices.

  • Good Days - national non-profit charitable organization that lifts the burdens of chronic illness through assistance, advocacy, and awareness.

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Fundraising:

 Global Genes has a number of resources that may be helpful to you as you begin your fundraising journey. These resources include:

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Online fundraising, also known as crowdsourcing, is another method to consider when faced with financial hardship because of a rare disease. Some patients find that friends, family, and community members are willing to contribute financially if they are aware of a difficult situation.


Non-medical Bills:

  • Chive Charities - helps to provide: Therapy equipment & sessions not covered by insurance, Handicap accessible home & car modifications, Mobility items. Purchasing of developmental & learning devices, Other medical needs as recommended by a medical professional. Grants to nonprofit organizations that assist individuals with rare diseases.

  • National Energy and Utility Affordability Coalition

  • Affordable Connectivity Program - provides eligible households with a discount on broadband service and connected devices. Helps with telehealth expenses.

  • United Way 2-1-1 -  comprehensive source of information about local resources and services in the country.

  • Assurance - Phones - Lifeline free phone government program

  • Annie's Angels -  helping local families struggling financially through a life-threatening disease, illness, or disability connecting neighbor to neighbor, friend to friend, and business to business in a caring fundraising network.

  • PC's for People - national nonprofit social enterprise working to get low-cost quality computers and internet into the homes of individuals, families, and nonprofits with low income.

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Transportation:

  • Ride Health - Ride Health partners with healthcare organizations and transportation providers to manage transportation benefits, strengthen enterprise transportation programs, and improve access to care and social services for complex populations.

  • PAN Foundation - Transportation - The transportation fund provides financial support to PAN patients with life-threatening, chronic, and rare diseases to access affordable and reliable transportation to and from activities that improve their overall health outcomes, including healthcare services, social connection and support, and healthy and nutritious food.

  • Assistance with Medical Transportation Costs - help with the costs associated with transportation for individuals with a diagnosis or diagnoses that have no other means to pay, usually by providing direct financial assistance, reimbursement, or vouchers

  • Miracle Flights - Provides free commercial flights to pediatric patients in need of life-changing medical care far from home, as well as service dog transportation.

  • Air Care Alliance - Helps patients in need gain access to distant medical care or supportive services by arranging free flights through volunteer pilots.

  • RARE Giving - supports individual rare disease patients as well as organizations that engage patients, caregivers, and others in the community in advocacy and public policy

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For additional information, visit Global Genes Financial Resources.

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