Outreach Program

Claire’s Place Foundation is currently developing a web-based information center providing the latest information about cystic fibrosis, links to resources in areas where cystic fibrosis hospitals or centers exist, and an interactive link to a social media network, such as Facebook, where families in the same areas can communicate with each other, view videos for children by children including Claire, give tips, provide tools for children to cope with the disease, and links to other resources, community conferences, and publications about cystic fibrosis.

Social workers at partnering hospitals will provide families with children with cystic fibrosis information about Claire’s Place Foundation, Inc.  Families feeling uncertain and isolated will be offered support and information on how to work through the treatment and care process by staff and other parent volunteers. Over the next 5 years, these programs may expand to include actual activities brought to the hospital for children and families to participate in, tool kits, local support groups for families and other groups for youth suffering of cystic fibrosis.

Claire will also have videos available for other youth to see. Such videos will include the following topics:

  1. Yoga and cystic fibrosis.
  2. How to travel with cystic fibrosis.
  3. How to not go crazy when you are in the PICU for a month.
  4. Traveling with all the medical equipment.
  5. Nutrition and cystic fibrosis.

Here’s a link to a popular website called “Positively Positive” where Claire is a correspondent and blogs on uplifting stories and activities on their site.  You can find her videos on their Youtube channel http://www.youtube.com/positivelypositive1/

While we build out our outreach program, please take a look at the following links as a beginning guide to community resources:

www.cff.org
Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters–patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.

Cystic Fibrosis Patient Assistance Foundation
Assistance for affording medications and devices for managing CF
http://www.cfpaf.org

Cystic Fibrosis Services
Additional patient assistance programs for those without insurance coverage
https://www.cfservicespharmacy.com/PatientAssistance/

Boomer Esiason Foundation
Links to assistance programs for Tobradex, Creon, Aceon, Estratest HS, Prometrium, EstroGel, Pulmozyme, Advair, and Cipro
http://www.esiason.org/pdf/Cystic.pdf

HospitalBillHelp.org
Guidance for Californians facing hefty hospital bills
http://www.hospitalbillhelp.org

NeedyMeds.org
Additional Patient Assistance Programs
http://www.needymeds.org

Partnership for Prescription Assistance
Database of Patient Assistance Programs
(Search by drug, company or program name)
http://www.pparx.org/prescription_assistance_programs/list_of_participating_programs

Patient Advocate Foundation
Mediation and arbitration services for patients with debilitating and life-threatening illnesses.
http://www.patientadvocate.org/

RXAssist Patient Assistance Program Center
Database of Patient Assistance Programs
(Search by drug, company or program name)
http://www.rxassist.org/patients/default.cfm