Roadmap Rare diagnosis Connecting With Others

For individuals and families living with rare diseases, support and advocacy groups provide opportunities to share knowledge and first-hand experiences.

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 daily life.

Resources

Links to regional, national and/or international patient organisations, umbrella organisations (representing everyone living with a rare disease), alliances and federations dedicated to one particular rare disease or to a group of rare diseases.

• Orphanet | patient organisations Europe
• Orphanet | Directory of international rare disease umbrella organizations
• National Organization for Rare Disorders | patient organizations US
• Genetic Alliance UK | A-Z of genetic and rare conditions
• Rare Voices Australia | support organisations for rare diseases including genetic disorders
• Genetic Alliance Australia | Genetic conditions support
• Eurordis | Rare disease helplines Europe
• What we can do for you | FEDER Spain
• Ultra Rare and Undiagnosed diseases | AnDDI France
• View of rare | VSOP Netherlands

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 rare diseases. Search for a specific disease and request to join these groups.

Reddit: a network of communities for any topic of interest. Search by health condition or specific disease.

• Reddit | Dive into anything

Attend conferences and events: many rare disease organizations and advocacy groups host annual conferences, workshops, and webinars where patients and families can meet and network. Check the websites of relevant organizations for event calendars and registration details.

Medical Centers and Hospitals: some hospitals and medical centers that specialize in rare diseases host support groups or can connect you with other patients. Ask your healthcare provider for recommendations.

Connect through clinical trials: participating in or following clinical trials can provide opportunities to meet other patients.

• Clinical Research Trials and You | National Institutes of Health
• Clinical Trials | NIH
• Australian clinical trials | Australian Government
• Orphanet | Research and Trials

Create your own group: if you can’t find a suitable group, consider starting your own. Use social media or community bulletin boards to gather interested individuals.

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