Roadmap Rare diagnosis Connecting With Others

Individuals and families affected by a rare disease look to support and advocacy groups for various reasons. Some may want to find a connection with other people who understand how a condition affects their lives such as caring for a family member with long-term needs and/or specific symptoms. Others are searching for medical information, treatment options and the latest research. 

People can also work together through advocacy groups to support research efforts or initiate research.

Some examples:

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

Resources

• https://www.navigatelifetexas.org/en/diagnosis-healthcare/children-with-multiple-disabilities-rare-conditions-undiagnosed
• https://www.eurordis.org/rare-disease-personal-stories/
• https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/
• https://rarediseases.org/for-patients-and-families/information-resources/patient-and-caregiver-resource-center/
• https://geneticalliance.org.uk/information/living-with-a-genetic-condition/finding-support-for-a-rare-or-genetic-condition/
• https://raisingchildren.net.au/disability/school-play-work/play-friends/play-friendship-disability
• https://globalgenes.happyfox.com/kb/article/8-using-storytelling-to-raise-awareness-for-your-rare-disease/
• https://globalgenes.happyfox.com/kb/article/5-how-to-promote-your-rare-disease-story-through-social-media/
• https://rarevoices.org.au/share-your-story/
• https://rarevoices.org.au/a-z-of-support-organisations/
• https://familyvoices.org/
• https://resource-hub.globalgenes.org/kb/article/3-support-groups-a-rare-advocate-s-guide-to-connection/

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