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.

My Mission

My story

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.

Join the conversation

Think rare

Rare is not so rare when you see the full picture.

Three hundred million lives. One urgent call for awareness, inclusion, and change.

Act bold

Turn understanding into action.

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

Leave no one behind

Technology must work for those the system forgets.

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

Reflection

Let’s Pause for a Thought. Together.

A space for deliberate reflection on rare diseases, technology, and advocacy, encouraging pause and thoughtful action rather than rushing past complexity.

Explore the gallery

Together

We can make this vision a reality

My mission is to provide inclusive education and make technology accessible to healthcare leaders, enthusiasts, and families.

What I stand for

Why does it matter?

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.

300M

People living with a rare disease worldwide

30M

People impacted by rare diseases in Europe

6-8%

People affected by rare diseases in Portugal

8000+

Rare diseases identified

70%

Of rare conditions start in childhood

72%

Of rare diseases are of genetic origin

95%

Have no treatment identified or approved

5-7 years

Average odyssey to a diagnosis

A father’s journey

It started with one diagnosis

My son has an ultra rare genetic condition. That moment opened a lifetime of advocacy, learning, and refusing to accept that small numbers mean small hope. I have lived the long wait and the fragmented systems. I speak from inside the room, not from the sidelines.

Read my full story

My Mission

What I stand for

This is not abstract policy. It is what I fight for every day as a father and advocate.

01

Inclusive education for every family and professional

02

Technology, AI and data patients can actually use

03

Faster diagnosis for conditions the system ignores

04

A voice for the ultra rare and undiagnosed

05

A future where rarity never means invisibility

SERaro

A voice for those still searching

SERaro gives voice to exceptional patients and those waiting for a diagnosis. As Vice-President, I help represent patients who would otherwise have no collective voice: the ultra rare, the undiagnosed, the forgotten.

Visit SERaro

My Mission

Events

Where advocacy meets the stage

All events

Guest lecturer

Global Pharma

2021 2022 2023 2024 2025 2026

Guest lecturer for six consecutive years at the Global Pharma executive education programme by GenH and Católica Medical School. Shared my rare disease journey with industry executives, highlighting patient data and a bold vision for the future.

Patient Advocacy Rare Diseases Executive Education

Patient Advocate & Speaker

Rare Disease Community Events

2020 2021 2022 2023 2024 2025

Regular speaker at patient advocacy events across Europe, sharing the journey of a father navigating ultra rare disease, SERaro’s mission, and the power of community voice.

Patient Advocacy Ultra Rare Disease Community

Podcast

Rare Mind Talks

The vehicle, not the destination. Conversations that carry the advocacy message further.

Rare Mind Talks

14: Between Care and Cure, Building What Doesn’t Exist Yet (with Erika Stariha)

00:00 / 31:57

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In “Between Care and Cure, Building What Doesn’t Exist Yet”, Erika Stariha shares her journey from undiagnosed parent to European foundation founder. Her son’s eight-year wait for a SATB2 diagnosis shaped everything that followed. Consequently, she built a foundation focused on systems, not just symptoms.

Erika discusses the real barriers to advocacy engagement: language, time and emotional load. However, she also reveals what motivates over sixty clinicians to volunteer their expertise. Meanwhile, she explains why clear priorities matter more than chasing every opportunity.

The conversation moves through leadership, collaboration and decision making under scarce resources. Ultimately, Erika reminds us that small progress is still progress. It offers honest insight for leaders navigating fragmented data and fragmented systems alike.

Rare Mind Talks podcast explores how AI, data, and Education are transforming healthcare for rare diseases. Hosted by André Correia, a digital transformation leader and rare disease advocate, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or
Follow us on Instagram @theraremindtalks

Erika Stariha shares her journey from undiagnosed parent to European foundation founder. Her son’s eight-year wait for a SATB2 diagnosis shaped everything that followed. Consequently, she built a foundation focused on systems, not just symptoms.