Roadmap No diagnosis Connecting With Others

Individuals and families living with an undiagnosed condition look to support and advocacy groups for various reasons.

Some may want to find a connection with other people who understand the impact of living with or caring for a family member with long-term needs and/or specific symptoms in the context of an unidentified cause. Sharing of experiences in accessing care and support can also be invaluable. Others are searching for medical information, treatment options and the latest research based on signs/symptoms and health history.  People can also work together through advocacy groups to support research efforts or initiate research (link to Research and Registries).

Some examples:

• Advocacy groups
  • Disease-specific groups
  • Groups for signs and symptoms
  • Umbrella groups
• Telling your story via social media

Resources

• https://rarediseases.info.nih.gov/guides/pages/120/support-for-patients-and-families
• https://www.rareconnect.org/en/community/undiagnosed-diseases
• https://resource-hub.globalgenes.org/kb/article/3-support-groups-a-rare-advocate-s-guide-to-connection/
• https://www.navigatelifetexas.org/en/diagnosis-healthcare/children-with-multiple-disabilities-rare-conditions-undiagnosed
• https://globalgenes.happyfox.com/kb/article/18-becoming-an-empowered-patient-a-toolkit-for-the-undiagnosed/
• https://rarediseases.org/for-patients-and-families/information-resources/patient-and-caregiver-resource-center/undiagnosed-rare-disease-patients/
• https://familyvoices.org/

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