The fight for equitable access to life-saving breast imaging is heating up! AdvaMed is pushing for Medicare to cover supplemental breast imaging, especially for women with dense breast tissue, a key factor in missed cancer diagnoses. This change could be a game-changer for early detection and women's health.
It's time to advocate for better coverage—because every woman deserves the best possible care.
#BreastHealth#MedicareCoverage#EarlyDetection#Advocacy#WomensHealth
Read more on Aunt Minnie: https://lnkd.in/gCfDcAqD
Anticipating a dynamic discussion on November 19th at the 2024 CSC Utilization Management Summit where I'll be exploring Balancing Costs and Care: The Role of Alternative Funding Programs and Patient Advocacy in Ensuring Access to Treatments. Cancer Support CommunityAimed Alliance
Today is LHON Awareness Day – a crucial part of World Mitochondrial Disease Week, and a cause that is particularly important to the Initiate team.
Leber’s Hereditary Optic Neuropathy (LHON) is a rare mitochondrial disorder that can lead to sudden vision loss, often affecting young adults in the prime of their lives. Raising awareness about LHON is not just about spreading information; it's about advocating for early diagnosis, supporting those impacted, and driving forward research that can change lives.
At Initiate, this mission is both professional and personal. We’ve seen first hand the impact that LHON can have on individuals and families, which makes today even more meaningful to us. Together, let’s help shine a light on mitochondrial diseases and work towards a brighter future for those affected by LHON.
Join the free interactive webinar today at 13:00 CEST (12 noon BST)
#LHONAware#WorldMitochondrialDiseaseWeek#InitiateTeam#MitochondrialDiseases#LHON#Advocacy#Research#Support
As a passionate advocate for breast health, I believe it’s crucial to address the unique challenges faced by ethnic minority communities. Breast cancer awareness and education must be inclusive, ensuring that everyone has access to vital information and resources. By fostering culturally competent healthcare, we can empower individuals to take charge of their breast health.
Let’s work together to break down barriers, share vital resources, and support one another in our journeys. Remember, early detection saves lives!
Join me in advocating for equitable breast health for all. Please drop in the comment section resources that may be useful to share with others!
#BreastHealth#HealthEquity#Advocacy#EthnicMinorities#BreastCancerAwareness#CulturalCompetence#Empowerment#CommunitySupport#HealthcareAccess
Want to learn more about my #Arachnoiditis#RareDisease story?
Please add my Podcast episode to your listening queue!
"Grassroots Initiatives in Rare Disease" by Rare Disease Review Western: https://lnkd.in/gTRkMGig
We talk about:
*my experience of the RD #diagnosticodyssey
* how my pre disability career and entrepreneurial experiences prepared me to create our #Arachnoiditis non-profit
*my optimism that AI and digital opportunities will help Rare Disease research quickly advance to bring new treatments and disease understanding; breakthroughs ahead!
*our 1st Research study, the largest ever Patient Reported Outcome study so far!
Please take a listen, and share with your communities!
This short webinar truly blew my mind! I felt the intensity of learning and could resonate deeply with so many insights shared. Though I haven't personally navigated the healthcare system or dealt with cancer, the challenges around system navigation, the immense value of advocacy, and the power of lived experiences in driving systemic change are all areas I connect with-especially in my work with immigrants and as an immigrant myself.
This webinar on Advancing Cancer Care through Advocacy and Lobbying opened a new perspective on how our human experiences can resonate and, collectively, how we can push for meaningful changes.
A huge thank you to Dr. Sevtap Savas, PhD for sharing this opportunity and creating a space for me and others in the community to learn about these critical issues.
Here’s my takeaway from today’s webinar:
Advocacy vs. Lobbying: Advocacy builds grassroots support, while lobbying follows a systematic approach to engage government. Despite its reputation, lobbying isn’t a “dirty word”—it’s a powerful way to present solutions and influence policymakers to bring government resources and attention to an issue.
The Art of Lobbying: Effective lobbying requires a consistent, knowledgeable, and strategic approach. It’s crucial to understand how to solve the problem, who to reach out to, and the best way to communicate with them. Timing is key, and knowing the right moment- such as election cycles - can amplify impact.
The Personal Touch: A handwritten letter might seem old-fashioned, but it stands out in a sea of emails, showing the recipient the time and care invested in the message. A clear, concise appeal, directed to the right person at the right time, can make a real difference.
Lived Experience Matters: The panelists—including Dylan Buskermolen, Dr. Don Desserud, Kimberley Thibodeau, and Dr. Sevtap Savas, PhD highlighted how patient perspectives add an irreplaceable dimension to advocacy. The CAPO Advocacy Committee is a shining example of combining expertise with the lived experiences of cancer survivors, patient advocates, and healthcare professionals, making the case for an inclusive, patient-centred healthcare policy.
I am deeply inspired by the commitment and knowledge shared today, which is relevant to so many areas beyond healthcare.
#CancerCare#Advocacy#Lobbying#SystemicChange#PatientCentredCare#Community
