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