Community and Advocacy for Cystic Fibrosis Patients

These events are Fundraising Walk-a-thons held in May, which is National Cystic Fibrosis awareness month. 

Walks are held in:

• Pawtucket, Rhode Island
• Newport, Rhode Island
• Sandwich, Massachusetts
• New Bedford, Massachusetts

Learn more about Great Strides Walks

This is an annual Bike Tour held in the Fall. Traditionally, it is held at Westport Rivers Vineyard and Winery.

Learn more about CF Cycle for Life

This dinner is an update for Rhode Island and Southeastern Massaner to publicly thank the many volunteers who support local fundraising events.

Compass is the Cystic Fibrosis Foundation's patient assistance service. It is a personalized service to help with the insurance, financial, legal, and other issues faced by anyone with cystic fibrosis, as well as their family and care teams.

The Compass team strives to provide excellent service regardless of income or insurance status.

Compass's team of case managers can provide free and expert guidance on challenges such as:

• Troubleshooting issues and researching options to help with the challenges you are facing related to life with CF.
• Connecting you to resources offered by community organizations, local and state governments, foundations, or other groups.
• Conducting a benefits assessment and providing a side-by-side comparison of your insurance plan options during open enrollment or special enrollment periods.
• Connecting with you and your insurance provider to help you understand your insurance options.
• Connecting you with other resources within the foundation such as the clinical trial finder, virtual events, and peer mentoring to help you get the support you need.

Contact Compass via email at [email protected] or by telephone at 844-266-7277 (844-COMPASS) Monday through Thursday 9 a.m. until 7 p.m. and Friday 9 a.m. until 3 p.m., Eastern Time.

Read the Compass brochure (PDF) 

Service request form (PDF)

Community Voice is an empowering, virtual opportunity for people with cystic fibrosis and their family members to share their experiences, perspectives, priorities, and knowledge to impact CF research, care, and programs. We can't be successful without the input of the CF community, and Community Voice is the avenue for getting that input. Each person's experience is unique, so it's critical to hear from as many people as possible. Whether filling out a two-minute survey or participating in a focus group or committee, Community Voice members are helping to make a difference for every person affected by CF.

Any individual age 13 or older who has CF or is a family member of a person with CF can join Community Voice. After filling out a form to share more about yourself and identify topics of interest, you'll receive, via email, customized opportunities to share your perspective and thoughts in surveys, focus groups, committees, working groups, and more. The best part is that this is a no-pressure way to get involved. You choose how much or how little you want to be involved and which topics are of most interest to you. There is no minimum participation requirement.

Member Benefits

• Partner with the CF Foundation, researchers, and other organizations on CF programs and initiatives that matter most to you.
• Gain an insider perspective by learning about CF Foundation projects and research through exclusive updates.
• Improve the future for the entire CF community. Your participation makes a difference.

Contact Community Voice via email at email [email protected].

Learn more about Community Voice

CF Peer Connect is a one-to-one peer mentoring program for adults with CF and their family members to connect about shared experiences. No matter what you’re going through, there is someone who has been through a similar experience and can offer support. After you request a peer mentor, the CF Peer Connect team will match you with an adult with CF or a family member, parent, partner, or spouse, who has experience with the topics you want to learn more about. 

You can request a peer mentor to talk about topics that are important to you, including:

• Going to college
• Making work/career decisions
• Dating, relationships, and marriage
• Adjusting to your child’s new diagnosis
• Finding balance as a caregiver
• Starting a family
• Parenting
• Getting diagnosed as a teen or adult
• Considering lung transplant
• Coping with bereavement

Find a CF Peer Connect Mentor

1. Complete the online request form (cfpeerconnect.com).
2. Talk with the CF Peer Connect team about what you’re looking for.
3. Get matched with someone who best fits your request.
4. Connect with your peer mentor over video, phone, email, or text.

Becoming a CF Peer Connect Mentor

If you have any questions about CF Peer Connect, email [email protected].

CF Peer Connect is available to Spanish speakers.

Please complete a mentor interest form if you would like to be a Spanish-speaking mentor.

Email [email protected] to request a Spanish-speaking mentor.

Online application to become a mentor (afasignup.formstack.com)

Learn more about CF Peer Connect