EchoFatherECHOFATHERA legacy beyond us

EchoFather Families

Understand the situation. Organise. Connect. Prepare.

I help families turn scattered documents, ideas and questions into a clearer story. I do not diagnose or replace professionals.

Request guidance See how I can help
VoluntaryNo chargeSubject to availabilityNot healthcare
EchoFather Families

I am not a doctor. My role is to help you understand the situation, organise the history and arrive better prepared for conversations with professionals.

Why EchoFather Families exists

Information may exist and still fail to become understanding.

Many families spend years moving through reports, tests, appointments and partial explanations. EchoFather Families does not exist to diagnose: it exists to help organise what is already known, understand the situation more clearly and prepare more useful conversations with professionals.

6.18 years mean time to diagnosis in the study population
20.9% waited ten years or more for a diagnosis
56.4% waited more than one year

3,304 people. A 2022 study using data from the Spanish Rare Diseases Patient Registry. The figures describe the study sample and do not represent every rare disease equally.

Read the source and methodology →

How I can help

Concrete support, with clear boundaries.

01

Understand

What is known, what has been reported, what is missing and what matters now.

02

Organise

History, documents, dates, versions, ideas and background.

03

Connect

Patterns and relationships worth reviewing, always as questions or hypotheses.

04

Prepare

Summary, priority questions, missing documentation and next steps.

I can help you

create order, distinguish evidence levels, organise ideas and prepare consultations.

I cannot

diagnose, prescribe, interpret tests with clinical authority or replace professionals.

I do not promise to find every answer. I promise to search for a path with rigour, honesty and respect.

Where it comes from

A method built from a real case.

EchoFather Families grew from the learning developed during Project S.F.: years of organising, checking, correcting and integrating complex genetic and clinical information.

What is shared is not S.F.’s private record, but a way of working: traceability, caution and separation between facts, evidence, interpretation and hypotheses.

Discover Project S.F. Read resources
Lived experience + applied training

Hernán Falbo is a father and data analyst with training in Big Data and Data Science.

Clinical validation always belongs to healthcare professionals.

EchoFather Families dossier cover

Family dossier · Spanish

When information does not form a map.

Six pages explaining what EchoFather Families is, how it may help, which materials can be built and where the boundaries are.

Fragmented informationOrganisation and timelineQuestions and preparationPrivacy and safeguards
Open PDFDownload

Tell me in general terms what you need to understand. In this first contact, do not send reports, patient names, record numbers or identifying information.

Initial guidance. No reports required.

El formulario recoge únicamente información general para valorar si EchoFather Families puede aportar algo y si existe capacidad para asumir el caso.

Do not enter patient names, documents, record numbers or identifying clinical information.

Professionals, associations and media can use the general contact form.

Professional and media contact