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Support and Resources

Living with a chronic disease brings many challenges throughout the lifespan for the whole family.  Your CF team is here to help with those challenges, whether they are medical, emotional, educational, financial or employment related.  Our licensed clinical social worker is available at any time to talk with you, either in clinic or by phone or appointment.  If we don't have the resources you need here, we can help connect you.  Below is a list of most commonly used resources but this is not intended to be an exhaustive list.  Please contact your CF social worker for more information.

Support and Education

www.cff.org   - General Information, Advocacy, Patient Assistance, research and center specific information

COMPASS - Formerly known as the CF Patient Assistance Resource Center.  Provides case management, advocacy and advice about assistance in various areas.

www.cfliving.com – Information and support for patients and caregivers

www.mycysticfibrosis.com – Personalized website, offers charts for care tracking, action planning, stories from other patients and newsletters.

http://www.cff.org/LivingWithCF/Webcasts/

www.cfvoice.com – educational website for all ages, need to register but has age specific information, activities, tips, stories, etc.  Also has webcasts, videos, etc., also age specific.

www.cysticfibrosis.com – recipes, section for kids, parenting survey, Know CF

Cystic Fibrosis for Kids

www.cysticlife.org – This is a website where patients and families find one another, talk about the issues that affect them and get information.  This is a social networking site, not a medically monitored site. 

www.thelittleacorn.com – offers journals for tracking care, visits, hospitalizations, etc. for patients with specific health conditions.  Journals are sold, they are not free.

www.parentingchildrenwithhealthissues.com – Website with informational articles on parenting issues for families with children with health care issues.  Also offers a book called, “Love and Logic” by Dr. Foster Kline.

Blooming Rose Foundation – Provides social services, positive contacts and hope to families immediately after diagnosis.

FACEBOOK – CF Foundation has its own site on Facebook and many patients connect with other CF patients and families through Facebook.  Please remember that facebook is not a supervised website so younger people should be monitored.

 

Financial Resources:

  • www.njsocf.org – NJ State Organization for Cystic Fibrosis.  Non-profit, state and privately funded group established to assist patients 18+ with CF with medications, co-pays, equipment, nutritional supplements, groceries, etc.  Applications available online.  Assistance to families with children under 18 is available up to $2000 per year.  Please ask Erin for more details.
  • www.cfpaf.org – Cystic Fibrosis Patient Assistance Foundation, sponsored by the Cystic Fibrosis Foundation.  Offers financial assistance for specific medications and links to assistance for other meds and equipment, as well as advocacy and case management.
  • www.panfoundation.org – Patient Access Network, set up to assist with co-pays for specific medications.  Please ask Erin for more details.
  • www.genentechaccesssolutions.com – Program set up by Genentech to provide assistance to patients in paying for Pulmozyme. 
  • Podcare Plus – Ask Erin for more information or call 1-877-999-8624 to register.  All patients who have cultured Pseudomonas and are taking Tobi are eligible for this program. 
  • www.cayston.com/cayston-access-program.html Cayston Access Program – Brings co-pays down to $25 for most CF patients.  Prescription must go through Cayston Access Program. Also has foundation that will pay for drug for uninsured patients. 
  • www.creon.com/CFPatients/EnrollInCFCareForward - CF Care forward program enrollment page. Copay assistance for insured patients, foundation assistance for uninsured and free supplements and vitamins monthly for those using Creon
  • www.live2thrive.org – Zenpep patient support program.  Copay assistance for insured patients, foundation assistance for uninsured, and free vitamins and supplements monthly for those using Zenpep.
  • www.needymeds.org – Non-profit that offers information on free and low cost drugs. This is usually a link to a foundation or manufacturer.  They also offer the free needy meds drug discount card, which provides up to 75% discount on prescription medications for those who do not have insurance.
  • www.thelivingbreathfoundation.com – This foundation supports research, medical assistance, scholarships and financial aid.
  • www.changealife.org – Change of Life Foundation – Mission of founder is to inspire and challenge grant recipients to follow his charitable example and one day repay the favor by helping others in need.
  • www.cflf.org – Foundation that provides financial assistance to individuals and possibly a “support person” for gym membership of some athletic activity.  Grants are usually up to $500 per year and you can reapply yearly.

 

Legal Hotline

  • www.healthcare.gov/law : A Guide through the new healthcare legislation.  Very useful for all regardless of the type of insurance you currently have.
  • CF Legal Hotline – (800-622-0385). This is a great source, headed by Beth Sufian, CF patient and advocacy lawyer.  Hotline is expert in advising around insurance issues, disability, medicare/medicaid, school laws, employment issues, COBRA insurance, HIPAA, FMLA and the new healthcare legislation.  Email address is cflegal@cff.org 

 

Scholarships and Financial Aid

  • www.cfscholarship.org The Cystic Fibrosis Scholarship Foundation (CFSF) — a scholarship program for students with CF enrolling in an undergraduate college program or a vocational school in the fall. CFSF was founded by a parent of a young adult with CF and is neither part of nor funded by the Cystic Fibrosis Foundation. Scholarships are awarded based on a combination of financial need, academic achievement, and leadership. For application forms, deadlines and other information, visit or call (847) 328-0127.
  •  www.AbbVieCFScholarship.com/apply - Applicants include U.S. citizens with CF who are enrolled or awaiting acceptance from an accredited institution in the fall. Awards are based on applicants’ creativity, academic excellence, community involvement and ability to serve as a positive role model for the CF community.
  • www.elizabethnashfoundation.org - awards scholarships to assist persons with CF to pursue undergraduate and graduate degrees. Scholarships are awarded on the basis of demonstrated need and accomplishment, both academic and other. Grants are made each year to people with CF who exhibit clear academic goals and a commitment to participate in activities outside the classroom. Grants are made directly to the academic institution to assist in covering the cost of tuition and fees
  • Boomer Esiason Scholarship programs The Boomer Esiason Foundation has multiple scholarship opportunities for people with various talents and needs. 
  • Scholarship Fund | New Jersey State Organization of Cystic Fibrosis - The NJ State Organization for Cystic Fibrosis has started a scholarship fund for NJ residents.