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WE ARE HERE TO SUPPORT PATIENTS WITH EXCEPTIONAL RARE DISEASES AND THOSE AWAITING FOR A DIAGNOSE
SER

Some conditions are so rare in Portugal that there aren’t enough patients to start their own Charity or Association.

We were born out of the necessity to give a voice to all exceptional rare disease patients, as well as, those waiting for a diagnose.

SERaro – Exceptional Rare Syndromes Association of Portugal, was born in 9th December of 2021.

We’re a non-profit and non-governamental charity. Our main objective is to help improving the quality of life and to support all rare diseases patients, those without a diagnosis, their families and carers. 

We are the 29th founder of RD-Portugal.

And we are also a member of the Plataforma Saúde em Diálogo.

Together with all our Members and Friends we aim to:

  • To ensure that all exceptional rare disease patients are represented, even when the number of diagnosis in Portugal is low for them to exist only as informal groups;
  • To welcome all of those to who there is no association, until there are conditions to create one if that is their aim;
  • To introduce patients who contact us to other existing charities or associations that already represent their disease;
  • To provide patients who don’t have a charity or association in Portugal with practical information, knowledge and useful contacts;
  • To share resources, contacts, support and knowledge about each rare disease, to grow their literacy;
  • To give rare disease patients and their families the comfort of feeling represented, as well as a sense of belonging.

REPRESENTED PATHOLOGIES:

  • Posteromedial bowing of the tibia
  • Addison’s Disease 
  • Wilson’s Disease 
  • Sporadic Pulmonary Lymphangioleiomyomatosis (LAM)
  • ZTTK Syndrome
  • Sarcoidosis
  • CINCA Syndrome
  • SATB 2
  • Sotos Syndrome
  • Wiedemann-Steiner Syndrome(WSS)
  • Hypertrophic cardiomyopathy type 9
  • Familial hypertrophic cardiomyopathy
  • Acute hepatic porphyria (AHP)

 

  • Charcot-Marie-Tooth Disease
  • Arnold Chiari 1
  • CMT 2A
  • CTNNB1

(These lists will be regularly updated)

Photo by Towfiqu barbhuiya on Unsplash