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
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
This month we want to highlight one of our incredible partner spotlights Remember The Girls, a nonprofit organization founded in 2017 by Taylor Kane, who is a carrier of the X-linked condition adrenoleukodystrophy (ALD). Taylor's journey began with the assurance that she was "just a carrier" and would not be impacted by ALD. However, during high school, she discovered that many ALD carriers were experiencing symptoms but were not being taken seriously. This revelation led her to delve deeper into advocacy for ALD carriers, where she found that women and girls affected by various X-linked diseases were often marginalized and overlooked.
Recognizing the need to raise awareness, Taylor established Remember The Girls to bring together females impacted by X-linked conditions and advocate for their needs. The organization focuses on highlighting the challenges these women face, including difficulties in accessing family planning options, genetic testing, and being at risk of symptoms while being excluded from research and often disregarded by medical professionals. Taylor's determination to support and uplift this community is the driving force behind Remember The Girls, and we are proud to share their mission and accomplishments with you.
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#raregivers#rarefather#raremother#raremoms#raredisease#rarediseases#patientadvocacy#caregiver#caregivers#calm#rarediseaseday#supportgroups#IONIS#Amgen#HorizonTherapeutics#PTCTherapeutics#Microsoft#RemembertheGirls#Sanofi#HarmonyBiosciences#Regenxbio#Ultragenyx#EMDSerono#Merck#PraderWilliSyndromeAssociation#TheEhlersDanlosSociety#SCN2AAustralia#EpilepsyFoundationAustralia#IndoUSRare#TheAssistanceFund
Sickle Cell Disease Awareness and Partnership Opportunity
As we work together to improve the lives of those affected by Sickle Cell Disease (SCD), I want to highlight the importance of awareness and collaboration.
Why Awareness Matters
SCD awareness is crucial to:
Reduce stigma and misconceptions
Increase early diagnosis and treatment
Improve access to healthcare and resources
Foster community support and advocacy
Drive policy change and funding
Partnering with Lukumontambo Foundation
I'm excited to explore partnership opportunities with Lukumontambo Foundation, a leading organization in the fight against SCD. Together, we can:
Amplify SCD awareness and education
Enhance community engagement and outreach
Provide access to resources, expertise, and networks
Strengthen advocacy efforts for policy change
Let's Collaborate!
If you're interested in learning more about SCD awareness and partnering with Lukumontambo Foundation, let's connect!
#SickleCellDisease#SCDAwareness#Partnership#Collaboration#LukumontamboFoundation#HealthAdvocacy#thechroniclesofsicklecell
Call to Action:
Like, comment, and share this post to show your support for SCD awareness!
Reach out to me to discuss potential partnership opportunities.
Follow Lukumontambo Foundation for updates on their work on Facebook and Instagram in "the chronicles of sickle cell".
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
