The association Lil’ Brave One (in Serbian Hrabriša) was founded on 21st December 2016 in order to provide support to the families with children suffering from neurotransmitter diseases, dopa-responsive dystonia and other neurometabolic disorders, so that the families could have the right to adequate diagnostics and adequate treatment in the Republic of Serbia and abroad.
The primary reason for founding the association is a little girl, Ana. She has proved to be a real “Lil’ Brave One” in fighting a neurotransmitter disease Tyrosine Hydroxylase Deficiency and bravely fighting for the diagnosis and the treatment, even though she had to overcome many obstacles in her path. It was those obstacles, or rather the desire to remove them and help the other families to have their rights acknowledged more easily, that led to the foundation of the association.
We know that the treatment is easier and the results of the therapy better if a neurotransmitter disease is diagnosed as early as possible and the therapy starts immediately. Thus, with a great desire to help the little ones to be diagnoses and have the appropriate treatments as soon as possible, plus with the desire to raise awareness of the existence of these disorders, their treatments and further research, we founded the association Lil’ Brave One.
Whether you are: a person suffering from such a disorder, a member of their family, a health care worker, a pharmacist or just an interested citizen, we are here to encourage you and provide support in getting a diagnosis, a treatment and further research in these disorders.
The goals of the association are:
- providing legal support and legal advice to families by explaining the current legal and sublegal acts, their use in making claims for their rights in health care and social welfare, as well as introducing them to the appropriate authorities for these rights and matters;
- raising awareness of the existence of neurotransmitter disorders, dopa-responsive dystonia and other neurometabolic disorders in children;
- providing information of options for treatment;
- cooperation with healthcare workers, with respect to their independence, integrity and expertise, all with a purpose to claim the rights of the families more efficiently;
- uniting families and working together;
- encouraging and coordinating activities in order to develop society’s care and interest in children with the aforementioned disorders, so as to provide more successful and fuller meeting of their demands and interests;
- cooperation with related associations in the Republic of Serbia and abroad.