patient assistance programs for cystic fibrosis

Patient Assistance Resources

Full Answer

How can I get financial assistance for cystic fibrosis?

A CF social worker can assist with finding additional financial assistance programs near you. Many smaller organizations award money for the care of CF patients living in a specific city, state or region. In addition, many states run cystic fibrosis-specific financial assistance funds to help support the costs of care.

How can healthwell help with cystic fibrosis treatment?

Assistance with the prescription drugs and biologics indicated for the treatment of cystic fibrosis. HealthWell estimates that patients use an average of $1,900 during their 12-month grant period for this disease area. Under this fund, HealthWell can assist with premium costs.

What are online support groups for adults with cystic fibrosis?

Online Support Groups for Adults with CF are sponsored to date by Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, Gilead Sciences, and private donors. This monthly group addresses the unique issues faced by teenagers between the ages of 13 and 18 growing up with CF.

What does CFRI do for people with cystic fibrosis (CF)?

In light of the high rates of depression and anxiety that are common among those impacted by cystic fibrosis (CF), CFRI offers financial support for counseling sessions as well as monthly caregiver support groups. CFRI also offers “Mindfulness 2.0,” an online class which draws upon Mindfulness-Based Stress Reduction techniques.

What organizations help with cystic fibrosis?

The Cystic Fibrosis Foundation (CFF) is a voluntary, non-profit organization. Its mission is to assure the development of the means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease.

What resources are available to families with cystic fibrosis?

We trust the following sites to provide useful information to parents, kids, teens and adults seeking more information on cystic fibrosis:www.esiason.org. ... www.happyheartfamilies.com. ... www.cff.org. ... www.cfww.org. ... www.iacfa.org. ... www.cfliving.com. ... www.respiratorycare.medscape.com. ... www.mycysticfibrosis.com.More items...

What is assistance fibrosis?

Assistance Fund, Inc. - Cystic Fibrosis Copay Assistance Program. Provides financial assistance for medication copays, health insurance premiums, and basic healthcare needs to children and adults who have cystic fibrosis. National.

Can children with CF live a normal life?

CF Foundation Patient Registry Based on 2019 Registry data, the life expectancy of people with CF who are born between 2015 and 2019 is predicted to be 46 years. Data also show that of the babies who are born in 2019, half are predicted to live to be 48 years or older.

How can I help my child with cystic fibrosis?

Work with your child's school give them time and privacy to perform airway clearance therapy. let them take medication. adjust attendance rules to let them go to medical appointments. provide extensions and help them catch up on lessons and assignments they miss due to medical appointments or illness.

What is CF peer connect?

CF Peer Connect is a one-to-one peer support program for people with CF and their family members ages 16 and older. No matter what you're going through, there is someone who has been through a similar experience for you to share, learn, and connect.

What celebrities have cystic fibrosis?

List of people diagnosed with cystic fibrosisNameLifeChristopher Davies(1978—)Alexandra Deford(1971–1980)Gunnar Esiason(1991—)Bob Flanagan(1952–1996)25 more rows

What is an interesting fact about cystic fibrosis?

1. Cystic fibrosis (CF) is the most common fatal genetic (inherited) disease in North America. 2. CF occurs when a person inherits a mutated (abnormal) copy of the CFTR (cystic fibrosis transmembrane conductance regulator) gene from each parent.

How is cystic fibrosis inherited?

Cystic fibrosis is a genetic disease. People with CF have inherited two copies of the defective CF gene — one copy from each parent. Both parents must have at least one copy of the defective gene. People with only one copy of the defective CF gene are called carriers, but they do not have the disease.

What is CF peer connect?

CF Peer Connect is a one-to-one peer support program for people with CF and their family members ages 16 and older. No matter what you're going through, there is someone who has been through a similar experience for you to share, learn, and connect.

How many people have cystic fibrosis?

Cystic fibrosis affects more than 30,000 people in the U.S., although there are approximately 10-12 million carriers of the CFTR mutation in the U.S., the disease affects males and females equally. Other names for this condition include:CF, cystic fibrosis of pancreas, fibrocystic disease of pancreas and mucoviscidosis.

What is CF in medical terms?

Cystic fibrosis (CF) is an inherited disease that causes progressive damage to the respiratory system and chronic digestive system problems but can involve multiple organ systems of the body.

What happens if you are eligible for assistance?

If you are eligible for assistance, the application will be instantly approved, and you will be enrolled into the program.

What is the All in for CF program?

All In For CF Scholarship Program. Who: Vertex's All in for CF Scholarship Program helps people with CF and their families (siblings, caregivers and children) in pursuing two-year, four-year or graduate degrees to offset the costs of attending college or graduate school. What: Vertex will award numerous scholarships of $5,000 each to members ...

How much does the Cystic Fibrosis Scholarship Foundation cost?

Who: Students who have CF and will be enrolled in an undergraduate program or vocational school. Amount: Varies, typically $1,000 per year with the possibility for multi-year awards.

How much is the Bonnell Foundation living with CF scholarship?

Who: Students with CF who have been accepted to a college and have a high school GPA of 3.0 or higher. Amount: up to $2,500, renewable for three years. Deadline: Please visit their website for updated application deadlines and instructions on how to apply.

What is the purpose of FAFSA?

Your FAFSA will help you qualify for scholarships, grants and student loans.

What is the BEF scholarship?

What: Whenever a quarterback gets sacked during the NFL season, $1,000 will be allocated to the Boomer Esiason Fund (BEF) Scholarship Grant Program.

How much does Elizabeth Nash Foundation cost?

Funds are not currently available for students pursuing an associate degree. Amount: $1,000 - $2,500.

Who is eligible for CF scholarships?

Who: Scholarships are awarded to student with cystic fibrosis who are pursuing undergraduate or graduate degrees with a clear sense of goals, and whose commitment to living life to the fullest, despite having CF are exemplary.

About Our Cystic Fibrosis Treatments Fund

HealthWell’s Cystic Fibrosis Treatments Fund is designed to assist eligible people living with cystic fibrosis with cost-shares associated with CF-specific treatments. In addition, HealthWell is also able to consider assisting with the full cost of hypertonic saline solution, nebulizers paired with treatments, and certain handsets.

Do I Qualify?

HealthWell bases eligibility on an individual’s medical, financial and insurance situation. To qualify for HealthWell’s assistance, applicants must meet the following eligibility requirements:

About Cystic Fibrosis

Cystic fibrosis (CF) is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs.

What is a compass for cystic fibrosis?

Compass is a personalized, one-on-one service that provides people living with cystic fibrosis and their families a partner in dealing with challenges related to life with CF, no matter where you are in your CF journey.

What time does the Compassis open?

Our regular hours of operation are Monday through Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 3 p.m. ET. Compassis closed during the following times so that case managers can spend time with their families:

Is CF case management free?

Our team of case managers strive to provide excellent service to anyone living with CF or their loved ones, regardless of income or insurance status, and the service we provide is completely free and confidential. We listen closely, explain thoroughly, and work through issues from start to finish.

Can Compassteam help you?

While the Compassteam can help you with many of life's challenges, there may be instances where we have to decline assistance for certain topics outside of our scope of services. For example:

How much does CFRI cover?

CFRI will cover the cost of your insurance co-pay for six sessions, or pay up to $120 per session for six sessions if you have no insurance, or your provider does not accept insurance or is outside of your network. CFRI will pay the provider directly. Participants must live in the United States. You can select a licensed therapist in your community (for a referral, you can ask your CF social worker).

What is a CF group?

An online discussion and support group for those who have lost a loved one to CF, whether recently or in the past. Led by Isabel Stenzel Byrnes, LCSW, MPH, a grief counselor who also lives with CF, the group will provide a safe place to engage in focused practices to help experience growth in coping with the loss of a loved one. Each meeting will have a different topic but there will also be time for open discussion. Adults and mature teens over age 16 are welcome.

How to register for CFRI 2021?

To participate, please send an email to CFRI to request the registration link. You only need to register once to attend any of the meetings, which will run through December 2021. Please allow 3-4 hours before the meeting to register.

How long before a CFRI meeting can I register?

To participate, please send an email to CFRI to request the registration link. Please allow 3-4 hours before the meeting to register.

How to submit assessments to CFRI?

Submit assessments and invoices: By participating in the program, you commit to take part in the brief evaluation process. At the first and last of the CFRI-supported sessions, the therapist will ask you to complete two short questionnaires, and submit them to CFRI along with the first and last invoice. Please notify us immediately if you discontinue therapy for whatever reason so the money can be released and used to support other people with CF and their families.

What is CFRI online?

CFRI provides a monthly Online Support Group for Adults with CF, which is open to participants across the globe. The group is facilitated by a social worker well versed in issues facing adults with CF.

What is CFRI support group?

CFRI provides a monthly CF Caregivers Support Group, which is open to participants across the globe. The groups are facilitated by a social worker well versed in issues facing CF caregivers. Participants are able to participate in person, as well as join from anywhere via telephone.

Pharmaceutical Assistance Programs

Financial Assistance

DME and Copay Assistance

Additional Nonprofit Resources

• Claire’s Place Foundation Cystic Fibrosis Assistance Programs Patient Advocate Foundation Mediation and arbitration services for patients with debilitating and life-threatening illnesses. PatientWorthy.com Patient Worthy is an online publication that provides relevant information to rare disease patients, caregivers and advocates, alike.

See more on cfri.org