Finding Strength in Knowledge

Finding relevant and reliable mental health resources can be challenging and may leave you feeling frustrated, overwhelmed and even potentially more stressed than you were before. But the truth is, mental and emotional health is just as important as physical health when it comes to the overall well-being of people and caregivers affected by a rare disease.

Although mental health is becoming a greater part of the conversation among patients, caregivers and healthcare providers, it’s crucial to continue to elevate the importance, reduce the stigma and connect the community to a wide array of resources, support groups and organizations.

Below are five resources designed to help the community navigate their unique needs.

Center for Chronic Illness

Our Odyssey

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

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

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.


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

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