The importance of family support groups for rare diseases lies in providing a safe environment for families to share experiences and challenges, reducing feelings of isolation and promoting mutual understanding. They also help raise awareness, build knowledge, foster positive relationships, and increase self-confidence, all of which are essential factors for resilience in the face of stress.

The main benefits of family support groups:

Sense of belonging and reduced isolation:
These groups give individuals a sense that they are not alone in facing challenges, breaking the barriers of loneliness and shame through the networking and gathering.

Exchange of experiences and knowledge:
They provide a platform for sharing practical experiences, success stories, and ways to cope with difficulties with individuals who better understand the circumstances.

Building Resilience and Adaptability:
By sharing experiences, families learn new strategies for coping with future stresses and challenges.

Improving Mental Health:
A supportive environment contributes to improving individuals' mental health, increasing their sense of security and self-confidence.

Breaking Stigma:
Speaking openly about problems in a safe environment helps break down self- and societal stigma.

Strengthening Family Relationships:
These groups encourage effective communication and improved understanding among family members, leading to stronger relationships.

Psychotherapeutic Support:
A supportive family provides a stimulating environment for sustainable psychological recovery and helps alleviate the individual's psychological burden.

Given the importance of the issue, the Emirates Rare Diseases Association has taken the initiative to establish family support groups for families affected by rare diseases. Each group is based on a number of individuals or their families with a particular rare disease.

The society’s management relies on and supervises the activities of groups managed by one of the members with the aim of coordinating the work of the group's programs and requirements and submitting them for study and implementation according to capacity. A doctor or disease specialist is often present in the group to provide guidance and respond to direct consultations.


• UAE Mucopolysaccharidosis Family Support Group
• UAE Duchenne Muscular Dystrophy (DMD) Family Support Group
• UAE Gaucher Disease Family Support Group
• UAE Neurofibromatosis Type 1 (NF1) Family Support Group
• UAE Patients Metabolic Diet Family Support Group
• UAE Fragile X Syndrome Family Support Group (coming soon)


Joining the group is open to members and non-members residing in the United Arab Emirates. Please send your application, along with an official medical report, to info@uaerdsa.ae.