Top Five Mental Health Resources for the Rare Disease Community

Center for Chronic Illness provides support groups and educational events for those living with chronic health challenges and offer online support groups focused on similar shared experiences.

• BIOPC & LGTBQIA+ Support Groups
• Loved Ones Support Groups
• Rare Chronic Illness Support Groups
• Living with/Supporting Loved Ones with Cystinosis
• Living with/Supporting Loved Ones with Urea Cycle Disorder
• Chronic Illness Art Support Groups
• Teens Living with Chronic Illness Support Groups
• Parenting Chronic Illness Support Groups

Our Odyssey connects young adults impacted by rare and chronic conditions with social and emotional support in the hope of improving their quality of life.

• Virtual Meetups and Programs
  • Social Meetup Series: a place to connect for young adults living with rare and/or chronic conditions
  • Topic Specific Meetups: a place to share issues important to young adults living with a rare and/or chronic condition
  • Empower Series: a place to learn, interact and empower young adults living with a rare and/or chronic condition
• Epic Arts
  • A weekly therapeutic art-making meeting up led an art therapist to have fun, express yourself and use creativity for young adults living with a rare and/or chronic condition

Compassionate Friends provides friendship, understanding and hope to those going through the natural grieving process.

• Crisis Hotline Information
  • Resources for those who are struggling with mental health
• Private Facebook Groups
  • A list of private Facebook groups that are moderated by bereaved parents, siblings or grandparents
• Related Organizations
  • Additional resources from a list of national non-profits who share the same mission of Compassionate Friends
• We Need Not Walk Alone
  • Articles by and for parents, sibling and grandparents who are grieving
• Annual Conference
  • A place for bereaved families to find community and hope, while learning and sharing with others
• The Grief Journey E-Book
  • A resource to provide what might happen in the grief process and the many responses that may be experienced
• Local Chapters
  • A chapter locator to help bereaved loved ones find local resources and community

Give An Hour creates resilient communities by improving mental health and emotional well-being, one hour at a time, while focusing on the rare caregiver perspective.

• Emotional Wellbeing Resources
  • A list of resources focused on the rare caregiver journey, including peer support, self-care tips and support groups
• Rare Care Peer Support Training
  • A 6-week, two-hour, weekly series designed to equip rare caregivers with tools to offer support through Give an Hour’s one-on-one peer support resource
• Blog Posts
  • A ‘Map’ for Rare Disease Caregivers from One of Their Own
  • Journey of a Rare Disease Caregiver: Mapping is Key 
  • The Importance of Self-Compassion

Angel AID provides mental health and wellness services to rare families through sustainable psychosocial training, transformative retreats and a connective caregiver-to-caregiver multilingual network.

• Raregivers™ Emotional Journey Map
  • Information about holistic, person-centered pathways and resources to support and sustain rare caregivers through cycles of hope and grief
• Wellness and Support Workshops and Retreats
  • A list of upcoming events, including support groups, workshops and retreats for rare caregivers
• Rare Mothers Community Support Group
  • A private group for mothers of children with a rare disease who offer relief – a place to be listened to without judgement, create relationships with women who truly understand and learn from their network of health and wellness experts