Social & Support Group Resources

Connecting with others who understand what you’re going through can make a tremendous difference. Whether you’re looking for emotional support, practical advice, or a community of people facing similar conditions, the organizations below offer trusted spaces to learn, share, and feel supported.

  • National Organization for Rare Disorders (NORD)

    Website: rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/

    NORD maintains one of the most comprehensive databases of rare disease–specific patient organizations. You can search by diagnosis to find communities offering support, education, and advocacy.

  • American Society of Hematology – Patient Groups

    Website: hematology.org/education/patients/patient-groups

    ASH provides a curated list of trusted support organizations for blood cancers and blood disorders. Their directory includes national nonprofits, patient alliances, and disease-specific community groups.

    Focused on hematologic diseases and includes both patient and caregiver resources.

  • Smart Patients

    Website: smartpatients.com

    Smart Patients is a highly active, peer-to-peer online platform where patients and caregivers can connect, ask questions, and share experiences. It hosts 100+ condition-specific communities.

    It’s well-moderated and widely used by clinical trial participants.

  • Cancer Support Community

    Website:cancersupportcommunity.org

    Cancer Support Community (CSC) offers free, professionally led support groups, education, and navigation services — both in person and online.

    They also offer free virtual and in-person support groups, professional counselors and navigators, and resources tailored to diverse patient communities.