RARE IS NOT SO RARE WHEN YOU LOOK AT THE FULL PICTURE.
KEYNOTE? ROUND TABLE?
LET’S MAKE IT COUNT.
Inspired by my son’s journey with an ultra-rare condition, I’ve made it my mission to use my voice, network, and digital leadership to empower patients, speed up diagnoses, and ensure no one is left behind. Collectively, rare diseases pose a significant global challenge in both education and healthcare, which demands urgent, coordinated, and strategic action.
WHY DOES IT MATHER?
EVERY RARE DISEASE MEANS A LIFE, A FAMILY, A STORY.
A disease is rare when it affects fewer than one in 2,000 people. Over 6,000 rare diseases have been identified and affect more than 300 million people worldwide, as many as the entire population of the world’s third most populous country. These numbers are powerful. And behind them are real stories, real people, and a growing urgency for awareness, inclusion, and change.
300,000,000
people living with a rare disease worldwide.
30,000,000
people impacted by rare diseases in Europe.
~800,000
people affected by rare diseases in Portugal.
6,000+
rare diseases have been identified.
70%
of rare conditions start in childhood.
72%
of rare diseases are from genetic origin.
95%
have no treatment identified or approved.
5-7 years
is the average odyssey of a diagnosis in rare diseases.
ADVOCATING ON GLOBAL STAGES
EDUCATION AND INNOVATION ARE CHANGING THE GAME FOR RARE DISEASES IN A BIG WAY.
I am particularly passionate about the power of education, data, and AI in rare diseases. Sharing knowledge and using innovation can speed up diagnoses, make care more personalised, and help us address the inequalities that affect this often-forgotten community.
These are the topics I like to discuss the most in my keynotes, round tables, and workshop moderation sessions:
- Empowering Rare Diseases through Education, AI & Data
- Health Tech Disruptions: Trends, Innovation & Impact
- Driving Change Through Advocacy & Innovation
By equipping patients, healthcare workers, and policymakers with the tools they need, we can make a positive impact.
MEMORABLE MOMENTS ON STAGE
FABRY ANNUAL MEETING
Fabry International Network (FIN)
I explored the significance of digital in rare diseases and how advocacy requires digital leaders to thrive in the digital age.
GLOBAL PHARMA
GenH / Católica Medica School
I shared my rare disease journey with industry executives, highlighting the power of patient data and outlining a bold vision for the future.
STARTUP BRAGA
GenH / Startup Braga
I explored the significance of incorporating patient voices into startups’ digital strategies, which leads to more meaningful and inclusive solutions.
@UNIVERSITY
GenH / Instituto Superior Técnico
I shared the importance of young talent in shaping a more inclusive and data-driven healthcare system for rare diseases.
GOOGLE CLOUD
Google Cloud Portugal
I moderated a roundtable on emerging technologies in healthcare, exploring the future of patient-centered digital solutions.
PNAID
Ministry of Foreign Affairs
I moderated a roundtable featuring investors, public and private sector executive leaders, to discuss digital health.
COME. LEARN. LEAVE INSPIRED.
THS ISN’T JUST ANOTHER TALK. It’s a conversation rooted in real stories, real struggles, and real breakthroughs, drawn from years of working at the intersection of rare diseases, education, data, and digital transformation.
✅ You’ll hear real stories with real impact, combining personal experience and years of experience in rare diseases.
✅ You’ll leave with actionable ideas, as I make Data and AI simple and human, focussing on healthcare.
✅ You’ll feel this talk was made for you, as I speak to leaders, patients, and innovators alike.
SPEAKING UP FOR RARE
