Claire’s Place Foundation has a network of families and young adults standing by to be Support Families for people newly diagnosed with cystic fibrosis or isolated families looking for assistance.
Families are connected with another CF family who will provide guidance in navigating the overall care process.
We understand that a diagnosis of cystic fibrosis can sometimes feel very scary and isolating. No one wants to hear they have a rare disease. Emotional support from others walking this path is incredibly helpful. That’s why we created our Support Families Network. Families living with CF are standing by to connect and help you navigate the emotional and physical demands of cystic fibrosis.
If you are interested in becoming a support family or are in need of help, please submit the form below.
“Our nine year old daughter has CF. She has spent much of the last 6 years in the hospital. In 2018 she had a lobotomy of her upper right lobe, and since then has seen a steady decline in lung function. In the last year she has had countless admissions. We are holding on until she is eligible for Trikafta, in Hope's she will have similar results as her peers. We could use some support.”
In an effort to support our community and the newly diagnosed, here’s a list of valuable resources:
CFRI offers educational and supportive services to the CF community and their caregivers.
The Bonnell Foundation offers education scholarships to those affected by CF, medical assistance and lung transplant grants. We hope to equip families with a roadmap to guide their way.
PAF Patient Advocate Foundation (PAF), a national non-profit organization which provides case management services and financial aid to patients with chronic, life-threatening, and debilitating illness.
Theravive is a network of licensed therapists and psychologists committed to helping people receive the best mental health care available. Through building bridges with others, they strive to lower mental health stigma.
Cystic Fibrosis Foundation: Compass provides assistance for affording medications and devices for managing CF.
Boomer Esiason Foundation supports families while getting lung transplants.
HospitalBillHelp.org provides guidance for Californians facing hefty hospital bills.
NeedyMeds.org has additional patient assistance programs.
Partnership for Prescription Assistance is a database of patient assistance programs (Search by drug, company or program name).
RXAssist Patient Assistance Program Center is a database of patient assistance programs (Search by drug, company or program name).
Ellie’s Army Ellie’s Army provides the funds necessary to help increase the chances of survival for these children and young adults battling critical illness while relieving the ongoing stress of not being able to afford the basic necessities of living.
