World Rare Disease Day
World Rare Disease Day, 29 Feb 2020
Living with a rare disease is becoming less and less rare!
Today is the rarest day of the year, dedicated to calling on all people to dedicate themselves to an increasingly pressing cause in our world. It also has the purpose of making people aware of the difficulties that patients who face rare diseases face daily. It also intends to reinforce the importance of scientific communities to find solutions to find a cure for more than 8,000 rare diseases in our world and for the 300 million people living with rare diseases on our Planet.
And while there is no cure, we need to find ways to manage the symptoms of these diseases and provide patients with the best possible comfort.
How can I be supportive?
In my work with Children with Rare Diseases, I try to find solutions to help these children, and their families, to live in a world where they will try to integrate themselves.
a Special Education dedicated to giving them an academic curriculum similar to
that of other children but there is much more ... there is a whole set of
skills that these children need to learn, in their own way and at their
And there is also the true skill of each of these children that we need to look carefully and help to develop. Rarity is precious and schools don't see it.
Whenever possible, parents should give high importance to the fact that these children need to develop an experiential curriculum.
This is what I will provide:
- increase language and communication skills,
- improve attention, focus, social skills, memory, and academics,
- decrease problem behaviors.
In summury, the development of academic skills such as reading, writing, verbal and non-verbal language but also the development of neuro-cognitive and neuro-motor skills, social, emotional, and relational abilities.
The goal is to increase behaviors that are helpful and decrease behaviors that are harmful or affect learning.
Each Rare Child is a special child. For this reason, I provide a different, human, compassionate and unique psychotherapy and neuropsychological support to children, parents, and families.
Daily. Persistently. Patiently.
By definition, rare diseases are chronic, serious and degenerative diseases that endanger the lives of patients.
In the EU, rare diseases are those that have a prevalence of less than 5 in every 10,000 people.
According to DGS, there will be about 600 000 people with these pathologies in Portugal, most of them children who will die prematurely and others who will survive with extreme difficulties due to social factors related to exclusion.
I call here for more equitable access to social opportunities, treatment and care for these children and adults living with a rare disease, and their families, in my country.