The Rare Mind by André Correia

The Rare Mind · Patient advocacy

My son has ZTTK Syndrome. His rarity will not mean invisibility.

I am André Correia. Father first. Advocate always. I fight for 300 million people affected by rare diseases, and for every family still waiting for a diagnosis.

Read my mission
Nearly 15 years
advocating for rare & undiagnosed patients
Guest lecturer
executive education and industry
Public speaker
rare disease events
ePAG
mentor and representative

The movement

What is
The Rare Mind?

Rare diseases affect over 300 million people, yet most patients still face delayed diagnoses, limited options, and major educational gaps.

The Rare Mind is a movement committed to changing that. Technology and innovation can elevate inclusive education, accelerate diagnosis, and improve life for patients and caregivers.

Think rare

Rare is not so rare when you see the full picture. One urgent call for awareness, inclusion, and change.

Act bold

Raising awareness is not a side note. It sparks curiosity, research, and smarter solutions.

Leave no one behind

AI and data belong in the hands of families, advocates, and caregivers, not only institutions.

Why it matters

300M
people live with a rare disease

A disease is rare when it affects fewer than one in 2,000 people. Over 8,000 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.

30M
impacted in Europe
6–8%
of people in Portugal
8,000+
rare diseases identified
70%
start in childhood
72%
are of genetic origin
95%
have no approved treatment
5–7 yrs
average wait for a diagnosis
Behind the numbers
Explore Rare Mind Knowledge →

A father’s journey

It started with one diagnosis

  1. A son, and no answer

    My son was born with an ultra rare genetic condition. For years nobody could tell us what it was.

  2. Six years to a name

    Six years of tests, appointments and fragmented systems before the diagnosis arrived: ZTTK Syndrome. I have lived the long wait. I speak from inside the room, not from the sidelines.

  3. A career turned into advocacy

    I brought 25+ years of experience in digital transformation, and my passion for technology, to raising awareness for rare diseases and giving them visibility.

  4. Today

    More than a decade into advocacy: ePAG mentor and representative, Vice-President at SERaro, based in Portugal after a little over 15 years abroad. Using my voice, experience and network to accelerate diagnosis, empower patients, and shape a future where no one is left behind.

“My son’s rarity will not mean invisibility.”

André Correia at the Open Academy x ERDERA School
As the father of a boy with an ultra-rare disease, I’m committed to using my voice, experience, and network to drive meaningful change on accelerating diagnosis, empowering patients, and shaping a future where no one is left behind.

What I stand for

  1. 01Inclusive education for every family and professional
  2. 02Technology, AI and data patients can actually use
  3. 03Faster diagnosis for conditions the system ignores
  4. 04A voice for the ultra rare and undiagnosed
  5. 05A future where rarity never means invisibility
  6. 06Data and research shared across borders, not locked in silos

Advocacy in practice

In the room, not on the sidelines

Where the advocacy actually happens: lecture halls, patient networks, European reference structures and conference stages.

Guest lecturer · 2021–2026

Global Pharma executive programme

Six consecutive years on the executive education programme by GenH and Católica Medical School, bringing the rare disease journey, patient data and a bold vision to industry leaders.

Public speaker · 2020–2026

Keynotes and panels for international audiences

Speaking and moderating at rare disease community and industry events on parenthood, patient voice, and what technology can realistically change.

European Patient Advocacy Groups

ePAG mentor and representative

Representing patients inside the European reference network structures, and mentoring the advocates coming into them.

Vice-President · SERaro

A voice for those still searching

Representing exceptional patients and those waiting for a diagnosis — the ultra rare, the undiagnosed, the forgotten.

Speaks on
The diagnostic odyssey
AI and data that reach families
Patient voice in industry decisions
Rarity and visibility
Audiences
Pharma and biotech
Clinicians and researchers
Patient organisations
Students and educators
Also
Host of Rare Mind Talks
25+ years in digital transformation
Portuguese and English
Based in Portugal

Podcast

Rare Mind Talks

The vehicle, not the destination. Conversations that carry the advocacy message further:  how AI, data and education are changing rare disease care.

Apple Podcasts Spotify RSS
Latest episode
Between Care and Cure, Building What Doesn’t Exist Yet
Episode 14 · with Erika Stariha · 31:57

The community is forming

Stay close until the space for patients and caregivers opens.

Get in touch @theraremindtalks