Roadmap No diagnosis Connecting With Others

For individuals and families living with an undiagnosed condition, support and advocacy groups provide opportunities to share knowledge about signs/symptoms as well as first-hand experiences of navigating health care systems and many aspects of daily life.

Making connections can reduce feelings of isolation and foster a sense of empowerment through the exchange of information, participation in group activities and encouragement of others who understand the physical and mental health challenges which are often part of continuing life without a diagnosis.

Resources

Telehealth services to provide information and support for families living with an undiagnosed condition in Australia and the US.

• SWAN Aus | telehealth patient pathways nurse
• UDNF | patient navigation program

Links to regional, national and/or international patient organizations, umbrella organizations (representing everyone living with a rare/undiagnosed disease), alliances and federations.

• Orphanet | international directory of rare and undiagnosed disease umbrella organizations
• Genetic Alliance Aus | genetic conditions and support
• Undiagnosed Diseases Network Federation US | community outreach and education
• SWAN Aus | overview of support for your family
• Genetic Alliance UK | living with a genetic, rare or undiagnosed condition
• Contact UK | support when your child does not have a diagnosis

Symptom-based support networks

Examples of organizations that offer connections and support based on signs/symptoms.

Child Neurology Foundation: education, research and support for children living with neurological conditions and their families.

• Child Neurology Foundation | Family Support Program

The Childrens Heart Foundation: information, treatment, research and support for patients and families affected by congenital heart defects.

• Congenital Heart Defects | Support Network 

Immune Deficiency Foundation: research, resources, education, advocacy and support for those with immunodeficiency as well as providing connections with clinicians and scientists.

• Immune Deficiency Foundation | Get Support

Epilepsy Society UK: research, advocacy and support to transform the lives of people with epilepsy.

• Epilepsy Society | Epilepsy Helpline

General advice

Social Media: platforms like Facebook have many private and public groups dedicated to specific signs/symptoms. Search by topic and request to join these groups.

Reddit: a network of communities for any topic of interest. Search by health condition or signs/symptoms.

• Reddit | Dive into anything

Suggest a resource: send email to gcwg@udninternational.org​