The Illusion of Inclusion!
So often I am asked about my thoughts about iinclusion or engagent with marginalised communities.

So... here are some of my thoughts.
#rare_disease #inclusion #patient_engagement

FCS Foundation Champions Awareness on Rare Disease Day for Families Affected by FCS The FCS Foundation takes the opportunity on Rare Disease Day to elevate understanding and support among families grappling with Familial Chylomicronemia Syndrome, emphasizing the importance of advocacy.

FCS Foundation Champions Awareness on Rare Disease Day for Families Affected by FCS #United_States #Boulder #Rare_Disease #FCS_Foundation #Chylomicronemia

Illumina's Innovative Genome Sequencing to Revolutionize Rare Disease Diagnostics in Florida Illumina announces its CLIA-certified laboratory will enhance rare disease testing at Florida State University, aiming to expedite diagnoses for affected children.

Illumina's Innovative Genome Sequencing to Revolutionize Rare Disease Diagnostics in Florida #United_States #Tallahassee #Illumina #Rare_Disease #FSU

Unlocking Potential: IMO Health Integrates Mondo Knowledge to Enhance Rare Disease Diagnosis and Research In a landmark initiative, IMO Health integrates Mondo rare disease knowledge into clinical workflows, improving the accuracy of diagnoses and supporting research advancements.

Unlocking Potential: IMO Health Integrates Mondo Knowledge to Enhance Rare Disease Diagnosis and Research #USA #Rosemont #IMO_Health #Rare_Disease #Mondo

PANTHERx® Reveals Insights on Rare Disease Care Coordination Ahead of Rare Disease Day On the brink of Rare Disease Day, PANTHERx® publishes vital research shedding light on care coordination challenges faced by patients with rare diseases.

PANTHERx® Reveals Insights on Rare Disease Care Coordination Ahead of Rare Disease Day #USA #Pittsburgh #PANTHERx #Rare_Disease #Care_Coordination

Boston Globe's Second Annual Rare Disease Summit Set to Facilitate Dialogue Among Experts and Advocates Join the Boston Globe's Rare Disease Summit on February 24, 2026, where experts and advocates unite to discuss innovations and patient care in rare diseases.

Boston Globe's Second Annual Rare Disease Summit Set to Facilitate Dialogue Among Experts and Advocates #United_States #Boston #Boston_Globe #Summit #Rare_Disease

Exploring Key Trends That Will Impact Rare Disease Clinical Development in the Future This article discusses transformative trends in rare disease clinical development, highlighted by an upcoming Xtalks webinar aimed at healthcare professionals.

Exploring Key Trends That Will Impact Rare Disease Clinical Development in the Future #None #Rare_Disease #Xtalks #Medpace

Understanding the Importance of Responsible Data Return in Rare Disease Clinical Trials: A Guide for Sponsors Join the upcoming Xtalks webinar to explore the critical need for returning patient data in rare disease trials, focusing on ethical and operational strategies.

Understanding the Importance of Responsible Data Return in Rare Disease Clinical Trials: A Guide for Sponsors #None #Clinical_Trials #Rare_Disease #Xtalks

Enhancing Rare Disease Trials Through Innovative Site Selection Strategies in Upcoming Webinar Explore a groundbreaking approach to site selection in rare disease trials during this insightful webinar, featuring patient-centric methods and real-world case studies.

Enhancing Rare Disease Trials Through Innovative Site Selection Strategies in Upcoming Webinar #None #Patient_Insights #Rare_Disease #Xtalks

Innovative 2026 Rare Disease Scholar Award by Oxford-Harrington Centre Encourages Pioneering Treatment Development The Oxford-Harrington Rare Disease Centre is calling for proposals for its 2026 Rare Disease Scholar Award aimed at developing therapies for rare diseases.

Innovative 2026 Rare Disease Scholar Award by Oxford-Harrington Centre Encourages Pioneering Treatment Development #United_Kingdom #Oxford #Cleveland #Rare_Disease

Oxford-Harrington Rare Disease Centre Announces 2026 Scholar Award for Innovative Therapeutics The Oxford-Harrington Rare Disease Centre calls for proposals for the 2026 Scholar Award aimed at advancing treatments for rare diseases, offering financial and developmental support.

Oxford-Harrington Rare Disease Centre Announces 2026 Scholar Award for Innovative Therapeutics #USA #Cleveland #Rare_Disease #Oxford-Harrington #Scholar_Award

EDIRA: How to fix a broken flower? Check out case examples from our Book of Doers featured on
lnkd.in/eQx2RQh7

#diagnostic_journey #lived_experience #health_inequity #rare_disease #systems_failure #mistrust #edi #ethnic_minority #PPIE.

Happy to chat... DM me.

NORD and Medlive Forge Stronger Partnership for Rare Disease Education The National Organization for Rare Disorders and Medlive renew their partnership to enhance medical education for rare diseases, improving patient care and outcomes.

NORD and Medlive Forge Stronger Partnership for Rare Disease Education #USA #NORD #Rare_Disease #Medlive #Boston_and_Washington

International Symposium on CAEBV: Aiming for Global Awareness and Treatment An international symposium aimed at raising awareness and sharing treatment methods for the rare disease CAEBV will be held in Tokyo in March 2026.

International Symposium on CAEBV: Aiming for Global Awareness and Treatment #Japan #Tokyo #Medical_Research #Rare_Disease #CAEBV

New Digital Community Launched for ATTR Amyloidosis Patients and Caregivers Health Union has introduced ATTR-Amyloidosis.net, a digital platform that supports ATTR amyloidosis patients and caregivers with resources and peer engagement.

New Digital Community Launched for ATTR Amyloidosis Patients and Caregivers #United_States #Philadelphia #Health_Union #Rare_Disease #ATTR-Amyloidosis

Understanding the Importance of Mental Health Support in Rare Disease Communities Join an enlightening webinar focusing on the critical role of mental health in the rare disease community and insights on holistic support strategies.

Understanding the Importance of Mental Health Support in Rare Disease Communities #USA #mental_health #Connecticut #Rare_Disease #Xtalks

Oxford-Harrington Rare Disease Centre Unveils 2025 Scholars Targeting Innovative Treatments The Oxford-Harrington Rare Disease Centre has selected ten scholars to receive the 2025 Rare Disease Scholar Award, aimed at advancing innovative therapies.

Oxford-Harrington Rare Disease Centre Unveils 2025 Scholars Targeting Innovative Treatments #USA #Cleveland #Rare_Disease #Oxford-Harrington #Scholar_Award

Exploring Digital Endpoint Strategies for Rare Disease Drug Development: A Webinar Insight Join our free webinar to learn about enhancing clinical trial data validity in rare disease drug development through effective digital endpoint strategies.

Exploring Digital Endpoint Strategies for Rare Disease Drug Development: A Webinar Insight #Canada #Toronto #Rare_Disease #eCOA #Xtalks

Exploring Innovative Directions in Rare Disease Care at NORD Breakthrough Summit The NORD Breakthrough Summit showcases cutting-edge ideas aimed at enhancing care, policy, and research for rare diseases. Experts share insights from their groundbreaking work.

Exploring Innovative Directions in Rare Disease Care at NORD Breakthrough Summit #United_States #Washington #Health_Innovation #Rare_Disease #NORD_Summit

Transformative Growth of Rare Disease Therapeutics Market Expected to Reach $495.27 Billion by 2033 The Rare Disease Therapeutics Market is projected to grow significantly, driven by advancements in gene therapy and RNA-based treatments, reaching $495.27 billion by 2033.

Transformative Growth of Rare Disease Therapeutics Market Expected to Reach $495.27 Billion by 2033 #India #gene_therapy #Hyderabad #Rare_Disease #RNA-based_Drugs

We’re thrilled to welcome Olivia Flynn to our Genomics Team.🧬Olivia recently completed her Master of Genome Analytics
@monashuniversity.bsky.social
and has a passion for #rare_disease research and translating genomics into improved health outcomes. Please join us in welcoming Olivia to the Team.

MyOme Enhances Rare Disease Diagnostics with Cutting-Edge Genome Technologies MyOme has expanded its rare disease test to include groundbreaking tandem repeat expansions and mitochondrial genome analyses, enhancing diagnostic accuracy.

MyOme Enhances Rare Disease Diagnostics with Cutting-Edge Genome Technologies #United_States #Menlo_Park #Rare_Disease #MyOme #genome_analysis

David Cameron to Address Rare Disease Innovations at Morgan Stanley Exchange 2025 Lord David Cameron will be a featured speaker at the Morgan Stanley Exchange 2025, discussing advancements in rare disease treatments through philanthropy and collaboration.

David Cameron to Address Rare Disease Innovations at Morgan Stanley Exchange 2025 #United_Kingdom #Oxford #Rare_Disease #Oxford-Harrington #David_Cameron

Enhancing Clinical Response in Rare Disease Studies: A Webinar by Xtalks Join Xtalks' informative webinar to explore innovative strategies for improving data quality in rare disease clinical trials, enhancing clinical response signaling.

Enhancing Clinical Response in Rare Disease Studies: A Webinar by Xtalks #Canada #Toronto #Clinical_Trials #Rare_Disease #Xtalks

Happy to see our work, led by @ivanbassi.bsky.social, out today in @jem.org! #Zebrafish help us find new treatments for a #rare_disease affecting #lymphatic vessels! Congrats to all authors and thanks to #MDBRide4Rare, #ODC_UPenn, @erc.europa.eu for support @weizmanninstitute.bsky.social

New TriNetX Report Reveals Real-World Data's Role in Rare Disease Breakthroughs TriNetX's latest report highlights how real-world data is transforming research in rare diseases, providing insights that can enhance treatment strategies.

New TriNetX Report Reveals Real-World Data's Role in Rare Disease Breakthroughs #USA #Cambridge #Rare_Disease #TriNetX #Real_World_Data

Rhode Island Takes Major Step by Establishing a Council for Rare Diseases The establishment of the Rare Disease Advisory Council in Rhode Island aims to support the 1 in 10 residents affected by rare diseases.

Rhode Island Takes Major Step by Establishing a Council for Rare Diseases #United_States #Rhode_Island #Rare_Disease #RAAP #Dan_McKee

New PNRI Podcast Highlights the Importance of Rare Disease Research in Advancing Healthcare for Everyone The Pacific Northwest Research Institute's latest podcast focuses on how rare disease research is informing innovations that benefit global healthcare solutions.

New PNRI Podcast Highlights the Importance of Rare Disease Research in Advancing Healthcare for Everyone #United_States #healthcare #Seattle #Rare_Disease #Pacific_Northwest_Research_Institute

NORD's Inaugural Rare Disease Symposium to Unite Experts and Leaders The inaugural Rare Disease Scientific Symposium by NORD features Dr. Vinay Prasad as the keynote speaker and brings together top experts to enhance research and treatment.

NORD's Inaugural Rare Disease Symposium to Unite Experts and Leaders #United_States #Washington,_D.C. #NORD #Rare_Disease #FDA_CBER

Montana's Rare Disease Advisory Council Promotes Support and Advocacy for Patients Montana launches its Rare Disease Advisory Council to enhance support for rare disease patients. This initiative will improve access to healthcare resources and advocacy efforts across the state.

Montana's Rare Disease Advisory Council Promotes Support and Advocacy for Patients #USA #Montana #NORD #Rare_Disease #Helena