Associations of patients with movement disorders or functional movement disorders
When it comes to receiving a diagnosis, patients and their families often feel lost. The specialist will give them the diagnosis, the treatment if necessary, and review the evaluation, but patient associations play a fundamental role in advising and accompanying them.
In addition, many of them, through charitable initiatives, raise money for aid and/or research. They can also carry out actions to make the disease visible and raise public awareness of the existence of some pathologies. Often there are also organized talks in which specialists and/or patients participate and share their experiences, which are very enriching, both for the patients and their families, but also for the specialists who participate in them.
These associations offer support groups, both for patients and family members, which in the case of many neurodegenerative or chronic diseases provide a safe place to tell and listen, to know similar cases and share each other’s experiences is very enriching.
We have set out to report on associations and foundations with which we work, or which we usually recommend to our patients.
In the case of the Movement Disorders Unit, and Functional Movement Disorders, directed by the Dr. Monica Kurtisand her team of neurologists: Dr. Marisa Almarcha y Dr. Isabel PareésWe have selected some of these associations and foundations:
ALDE, the Spanish Association of Distonia
Ampastta. Tourette’s Association
TNF Spain. Functional Neurological Disorder Association
ASYD Asociación de Atrofia Multisistemica de España (Multisystemic Atrophy Association of Spain)
Parkinson’s Foundation (American Parkinson’s Association)
ON OFF Parkinson Association Murcia
If you are an association or foundation, you can contact us so that we can give you visibility among our patients, we know that there are many more and that the work of all of them contributes.
And from here we encourage patients, relatives and caregivers to inform themselves, surely in your community there is an association or foundation nearby with which to collaborate or which, due to your personal circumstances, may be of interest to you.
