Patient organisations play an important role in supporting people with neurological conditions and their loved ones. They provide information, counselling, psychosocial support and space for sharing experiences. They also contribute to education and advocacy of patients’ rights. They often work with professionals and research institutions to improve care and the quality of life.
On this page you can find an overview of organisations that are dedicated to neurological diagnoses. Here you will find organisations dedicated to Parkinson’s disease through autism spectrum disorders to epilepsy. Together they form an important part of the care system, linking the professional world with the everyday reality of patients.
A list of patient organisations across a range of diseases, not just neurological, can be found on the website Ministry of Health of the Czech Republic.
The only organization in the Czech Republic focused on patients with amyotrophic lateral sclerosis (ALS). Offers consultations with a multidisciplinary team, outings to the home environment, equipment rental and convalescent stays for patients and their caregivers.
The Muscular Dystrophy Association is a national patient organization that brings together people with neuromuscular diseases, their families and loved ones. It provides social counselling, organises rehabilitation and educational events, promotes access to modern treatments, advocates for improved multidisciplinary care and publishes the magazine Zpravodaj. Our aim is to improve the quality of life of patients, to strengthen their self-sufficiency and to promote togetherness.
The Alliance for Individualized Support (AIP) brings together over 50 parent associations, patient and umbrella organizations, and social service providers. It works to ensure that people with significant disabilities and illnesses and their carers are supported according to their needs in a natural environment. AIP advocates for systemic change in social and health care, promoting care coordination, fair assessment of needs and accessible services.
Cerebrum is a patient organisation operating since 2007, providing counselling, running a community centre and conducting awareness-raising activities. Its counselling centre has a nationwide reach and offers psychosocial support, help with signposting to other services and a human approach. The organisation is dedicated to quality use of leisure time and prevention of social isolation, for example cognitive training, communication with speech therapy elements, fitness exercises, art workshops, movement and social activities or virtual groups. Awareness-raising activities draw the public’s attention to the risks and consequences of stroke and head injuries. The organisation also publishes information brochures to help better understand the issue.
Since 1997 it has been helping people with dementia and their carers. It provides counselling, home respite care, information materials and memory training aids. It organises professional events (e.g. Prague Gerontological Days), awareness campaigns (Memory Week, Memory Days) and certification of services for people with dementia.
He is a member of Alzheimer Europe and Alzheimer’s Disease International.
Patient organisation dedicated to the complex issue of rare diseases. It currently has 52 patient organisations and more than 200 individual members with very rare diseases. It represents very rare (not only) neurological diseases. The long-term goal is that no patient with a rare disease is left behind. CAVO proposes and advocates for systemic changes to benefit all patients with rare diseases, representing patient organizations and individual members to ensure optimal care and treatment for their diagnoses.
The patient organization provides online therapeutic care throughout the country in the home environment. The team consists of a social counsellor, psychologist, physiotherapist and speech therapist. It assists patients who have suffered an injury, stroke or other brain injury and their caregivers with navigating aftercare, rehabilitation and securing social and financial support. She works with patients who have acquired brain injury (stroke, trauma, brain cancer, poisoning), their caregivers, rehabilitation workers, occupational therapists, and social workers.
The organization offers online cognitive training, psychotherapy for patients and caregivers, nutritional counseling or an autoimmune protocol.
INTEGRATION CENTRE SASOV z.ú. (ICS) is one of the longest running social service providers focused exclusively on supporting people with autism spectrum disorder (ASD) and their carers. ICS has long provided professional support at its branches in Jihlava, České Budějovice, Jindřichův Hradec and Prague 10.
The ICS provides registered services such as social rehabilitation, professional social counselling and day care. It also provides additional services such as psycho-rehabilitation stays, leisure activities and accredited education.
It helps families in crisis situations and creates a safe environment for the healthy development of children and adults. Provides long-term social services – Family House, family counseling, early care and respite services. At the same time, it responds to the current needs of society and offers professional social counselling, early care and respite support on the basis of registration under the Social Services Act.
KOPAC is an independent public benefit organization founded in 2013, which strives for the availability and effective use of medicinal cannabis in the Czech Republic. It brings together patients, professionals and the public to improve conditions for cannabis therapy, inform about its benefits and remove unnecessary barriers.
The organisation supports patients with chronic pain, neurological or oncological diagnoses, their families and carers. It also works with doctors and health professionals interested in cannabis treatment.
The patient organization LÍP A SPOLU, z.s. focuses on all-round support of people with autism and their families. It operates since 2019 mainly in the Liberec and Ústí nad Labem regions. It is dedicated to individual counselling for families of children with autism in the field of education, social and legal issues. It organizes parent support group meetings, trips and weekend stays for whole families, leisure club, suburban and residential camps for children with neurodevelopmental disabilities. It focuses on educating parents and professionals and educating the public on autism-related topics. Provides homesharing, a community-based alternative respite service for caring families. It has long worked with many organizations and institutions to improve the lives of people with neurodevelopmental differences and their caregivers.
Migraine-help is a patient organisation that has been supporting people with migraine and other headaches since 2018. We provide expert counselling, psychological and social support, connect patients in a safe environment of self-help groups and organise awareness raising events for the public and professionals. It has a long-standing commitment to fighting stigma, advocating for improved access to modern treatments, and offering practical tools for managing daily life with migraine.
The National Institute for Autism is a non-profit organization providing social, health, psychological and leisure services to people with autism. It offers counselling to individuals, families and institutions, operates a residential facility, provides early intervention, psychodiagnostics and skills training. It is the founder of the SPC, a kindergarten and the PASPARTA publishing house. It is a member of Autism-Europe, which aims to improve the quality of life of people with PAS across Europe. It is dedicated to children and adults with Autism Spectrum Disorder (ASD) and their families.
PARENT PROJECT, z.s. is a parent patient organization that unites and advocates for the interests of patients with rare neuromuscular diseases, their caregivers and families, primarily patients with Duchenne and Becker muscular dystrophy (DMD/BMD). It provides multidisciplinary support for its members and caregivers through its own expert team, including telephone and electronic counseling. It organises psycho-rehabilitation stays which include education for patients and their families. Organizes stays for patients without parents with assistance and summer camps for children. It also provides educational and informational activities for patients, professionals and the general public. It is significantly involved in patient advocacy, proposing and advocating systemic changes for the benefit of patients with neuromuscular diseases and other groups of chronically ill patients.
E supports people with epilepsy and their loved ones across the Czech Republic. It helps them to cope with challenging life situations while striving to improve their status and role in society. It focuses on professional psychosocial counselling, peer support and online groups, as well as advocacy work. It places a strong emphasis on education – organising talks, webinars and creating information materials for patients and the public. Through awareness campaigns, it contributes to reducing prejudice about epilepsy and raising awareness of the disease. Through its social enterprise, the flower workshop Arrangery, it provides employment opportunities for people with epilepsy.
The Parkinson Society, z. s. is a nationwide patient organisation that has been active in 11 cities across the Czech Republic since 1994. It focuses on supporting people with Parkinson’s disease, their families and carers by providing advice, sharing experiences and mutual support.
In addition to awareness-raising activities to raise awareness of the disease and its impact on life, it organises rehabilitation and exercise activities, therapies, meetings, workshops and lectures to strengthen the patient community. It works with professionals to connect patients with doctors, therapists and other specialists.
The ROSKA Union is a national patient organization that has been helping people with multiple sclerosis (MS) and their loved ones for more than 33 years. Today it has 30 affiliated associations across the country. Through its website it runs counselling services called Support for MS patients in crisis situations and Doctors’ counselling to help manage everyday life with MS. The ROSKA Union also organises various lectures, courses, exercises, as well as convalescent stays and art and cultural activities. In addition to physical health, psychological well-being, which is often neglected in chronic illness, is equally important. Since 2017, the ROSKA Union has also been organising the Roskiad, a popular sports competition for MS patients that is about meeting, sharing, support and the joy of movement. At the same time, the ROSKA Union brings a lot of important information to patients, including the most up-to-date information.
Organization Za sklem o. s. has been supporting people on the autism spectrum and their families since 2011. It provides four registered social services in its branches in Prague, Brno, Olomouc, Zlín and Kyjov – professional counselling, social activation services, social rehabilitation and day centres.
In addition to direct support, it engages in education, advocacy and advocates for systemic changes in education, health and social care. It helps more than 2,000 clients a year across the country.
EpiStop helps people with epilepsy to live a full life. It creates a space for patients, doctors, carers and professionals to work together and aims to improve the position of people with epilepsy in society.
It focuses on improving the quality of health care, educating patients and the public, and providing social and legal support.
The aim is to remove barriers, strengthen understanding and improve the living conditions of people with epilepsy and their loved ones.