5 Mental Health Resources to Help Rare Patients & Families Feel Less Alone

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

October 10th is World Mental Health Day – an international day for mental health education, awareness and advocacy. 

It is not surprising that having or caring for someone with a rare disease may have an impact on one’s mental health due to a variety of factors including diagnostic delays, health-related financial strain, barriers to care and more. 

Research by Dr. Kathleen Bogart, Associate Professor of Psychology at Oregon State University shows that people with rare diseases experience increased levels of anxiety and depression compared to the general U.S. population.

Of course, these mental health challenges have been compounded by the global COVID-19 pandemic. A glimmer of hope, however, is that mental health is becoming a greater part of the conversation among the rare disease community and its supporters. Consequently, there has been more research, support groups, organizations, articles and events dedicated to the rare community’s emotional wellbeing.

To help contribute to this important conversation, we’ve compiled five of these rare disease-specific mental health resources that may help you feel less alone.

Organization: ANGEL AID

ANGEL AID is a non-profit organization that believes in supporting rare disease families by uplifting the caregivers. They provide mental health and wellness services to rare families in over 15 countries through psychosocial training, online and in-person events and a caregiver-to-caregiver network. The organization also recently unveiled their Raregivers™ Emotional Journey Map, a six-stage cycling of hope and grief for rare disease patients and caregivers, based on extensive research from 287 peer-reviewed academic articles, stakeholders reviews, focus groups and data analyst mapping. 

Article: “Survivor’s Guilt” by Anna Laurent

In an article for sustainable and inclusive swimsuit brand MIGA Swimwear, Anna Laurent, who is living with Alagille syndrome, writes about her interrelated rare disease and mental health journeys. A “relatively healthy young adult”, Anna describes the survivor’s guilt she feels as having the largest impact on her mental health. She explains that examining the “why” behind her decisions helps her cope with these difficult feelings.

Hashtag: #RareDiseaseTruth

The #RareDiseaseTruth hashtag, started on Twitter by rare disease advocate Neena Nizar in 2021, is a collection of tweets posted by members of the rare disease community sharing about the realities of rare. Reading through this hashtag will show you the shared truths of people impacted by rare disease and expand your understanding of the vast experiences of this community. The hashtag is still active and new tweets are added every week! 

Video: Managing Mental Health, Ambiguous Grief, and the Impacts of Diagnosis and Disease Progression

This recording of a panel from the 2021 Global Genes RARE Patient Advocacy Summit brings together two mental health experts and two rare caregivers to discuss emotional wellbeing for rare patients, parents and caregivers. Some of the topics they cover include coping with an uncertain future, impacts of ambiguous grief and the value of mental health counseling and support.

Support group: Rare Disease Male Support Group

In 2021, David Ross, who is living with a rare disease, set up a Facebook group for men in the rare disease community. This topic became the focus of David’s advocacy after he realized that many men in the rare disease community were not seeking support. He along with fellow advocates Michael Mittelman and Emmitt Henderson III began hosting Zoom support group sessions for males in the rare disease community to provide a safe space for them to come together and discuss the impacts of rare disease on things like relationships and fatherhood. 

Finally, if you or a loved one are in need of immediate support, the 988 Suicide & Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week, across the United States. While not specific to rare disease, the Lifeline consists of a national network of over 200 local crisis centers, combining custom local care and resources with national standards and best practices. By calling or texting 9-8-8, you’ll be connected to mental health professionals with the Lifeline network.