Community and Advocacy for Cystic Fibrosis Patients
Cystic Fibrosis Center Family Advisory Board
To deliver patient- and family-centered care, we partner with patients and families from our care center to better understand needs, priorities and values within our community. Since 2018, the pediatric care team has partnered with parents to establish the Family Advisory Board (FAB).
The purpose of the FAB is to:
- Serve as an advisory resource to hospital administration and staff of Rhode Island Hospital and its Hasbro Children’s Hospital Cystic Fibrosis Care Center.
- Develop and maintain optimal communication.
- Solicit input and feedback from families about our care center function, including quality improvement projects, policy and educational development.
- Assist in the development of informational resources for patients and families.
- Participate in the quality improvement activities conducted by the care team.
- Advocate for optimal care at the hospital, state and national level along with the care team.
Resources for Cystic Fibrosis in Southeastern New England
Here are ways you can become Involved in the Cystic Fibrosis Foundation Massachusetts-Rhode Island Chapter.
Great Stride Walks
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
CF Cycle for Life Rhode Island Ride
Annual Cystic Fibrosis Foundation Rhode Island Dinner
This dinner is an update for Rhode Island and Southeastern Massaner to publicly thank the many volunteers who support local fundraising events.
For more information about these events as well as additional information about the Cystic Fibrosis Foundation local chapter, visit cff.org/Massachusetts-RI, email Philomena Santos-Higgins at [email protected], or call 401-662-1925.
For additional chapter events held in Massachusetts please contact 508-655-6000.
National Resources for Cystic Fibrosis
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.
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.
- 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].
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
- Getting diagnosed as a teen or adult
- Considering lung transplant
- Coping with bereavement
Find a CF Peer Connect Mentor
- Complete the online request form (cfpeerconnect.com).
- Talk with the CF Peer Connect team about what you’re looking for.
- Get matched with someone who best fits your request.
- 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.