The future of rare diseases
Innovation and Society
A SERaro conference on innovation, society, and the journey of people with rare diseases in Portugal.
Who we are
We give a voice to exceptionally rare diseases without representation and to everyone still awaiting a diagnosis.
Founded on 9 December 2021, SERaro – Association of Exceptionally Rare Syndromes of Portugal works to improve the lives of people with exceptionally rare diseases, those awaiting diagnostic confirmation, and those who care for them.
We are the 29th founding association of RD-Portugal. We are also members of the Plataforma Saúde em Diálogo.
Any illness brings challenges; in ultra-rare diseases, they are even greater. Rarity makes it harder to access medical, human, and informational support.
SERaro fills the representation gap in Portugal, representing dozens of pathologies and people without a confirmed diagnosis.
Our main goal is to improve the lives of people with rare diseases and those awaiting diagnostic confirmation.
- 8%–10% of people in Portugal
- 30 million in Europe
- 300 million worldwide
- More than 7,000 rare diseases identified
Who we work with
Families and patients
Clear information, human support, and connection with others on the same rare journey.
Healthcare professionals
Reference resources, ultra-rare disease literacy, and clinical contacts by pathology.
What we offer
- Access to relevant information about your condition
- Guidance on your rights as rare disease patients
- Medical support contacts by pathology
- Connection with others who share the same condition
- Words of support and hope
Our commitment
- Ensure representation even when cases in Portugal are very few
- Welcome those without a dedicated association yet
- Refer to existing associations when appropriate
- Provide information when no association exists in Portugal
- Share resources and promote rare disease health literacy
- Offer strong representation and a sense of community
Represented pathologies
This list is updated regularly. Select a pathology to learn more.
This list is updated regularly.
Special projects
Featured videos and campaigns on YouTube.
Informative videos
From law to real life
Inclusive education
Webinar on inclusive education for children and young people with rare diseases — school, families, and rights.
Follow SERaro
Stay updated on Instagram, Facebook, LinkedIn, and YouTube.