Six posts were made to the CFFC Facebook page during the week of 12/11-17/2022.
12/11/2022 – The Challenges of Pregnancy With CF – Children are a big part of a “normal” life so it is not surprising that an increasing number of people living with CF seek parenthood.
12/12/2022 – Statement from Cystic Fibrosis Canada’s Healthcare Advisory Committee Regarding the 2022 Cold and Flu Season – You already know this about the flu season, but a little reminder can’t hurt – even when it comes across the border.
12/13/2022 – Here’s My Idea for Better Consumer Access to Prescription Drugs – Advocacy is a critical element in gaining improvements. Here’s a pitch to working on pharmacy access.
12/14/2022 – Valérie’s Story – A mom’s perspective on the accomplishments of her daughter and the hope that researchers will find similar treatments for those who don’t benefit from the current CTFR modulators.
12/15/2022 – The Impact of Patient and Health Care Advocacy – [NOTE: This survey has expired.] The following is an announcement for a survey opportunity from the Coalition of Health Care Advocacy Organizations.
What is the impact of a patient or health care advocate being involved in patient care? Complete a brief, confidential online survey to help us find out. Don’t wait – the deadline to participate is December 20th !
Patients, caregivers, advocates, and medical professionals can answer this survey – your perspective is welcome!
*The advocates we are referring to include but are not limited to health and health care advocates, patient advocates, patient navigators, health or patient advisers, care managers, and case managers, as well as those who work on behalf of communities, consumers, and family caregivers (including advocacy on legislative and health policy initiatives). Advocates may work independently, in a medical setting, or on behalf of communities or disease-specific populations across organizations and agencies.
The survey is available in Spanish and English. It is designed and run by experts and volunteer researchers who care about the patient experience and is not sponsored by pharmaceutical companies.
12/16/2022 – How Listening to My Body Led to My CF Diagnosis – Yesterday, we posted a survey relating to patient advocacy. Today’s post is a story that demonstrates the importance of advocacy – whether it is self advocacy or help from a third party.