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May is Mental Health Awareness Month. In addition to enduring difficult physical symptoms daily people with rare diseases and their families frequently deal with anxiety, stress, social isolation, and depression. Families and individuals affected by rare diseases often encounter various obstacles, including frequent hospitalizations, chronic symptoms like pain and fatigue, as well as employment and financial challenges. Additionally, those belonging to historically marginalized, underrepresented, and underserved communities face even greater hardships in navigating the impact of rare diseases. These difficulties might look like a lack of representation in the healthcare system, stigma, bias, discrimination, lack of access to treatment, and late diagnosis.

In a 2017 study, Bogart & Irvin discovered that people with rare diseases had lower quality of life and increased worry, despair, exhaustion, pain, physical functioning, and social engagement. To read the study, please click here. Although 1 in 10 Americans are impacted by rare diseases, mental health professionals might lack disease-specific knowledge and training to help them. To combat these barriers, we must lessen inequalities, improve patients’ quality of life, prioritize mental health support, create welcoming communities, and give mental health specialists the resources they need to help rare patients and their families. We can create meaningful communities through disease-specific support groups and conferences for patients with rare diseases that offer a unique opportunity for companionship and emotional support, reducing loneliness and promoting solidarity. Additionally, we can also work with mental health organizations and mental health training programs on adapting evidence-based psychological therapeutic services to be used with disease-specific groups in order to help people living with rare diseases and their families to lessen symptoms of depression, anxiety, and increase coping skills.

Recognizing the significance of fostering equity, the Rare Disease Diversity Coalition understands the vital role of prioritizing mental health and emotional well-being to enhance the overall quality of life for individuals affected by rare diseases. The organizations listed below offer mental health resources to support patients and their families living with rare diseases.

Alport Syndrome Foundation provides:

  • Direct Connect Zoom meeting-support group on Facebook.
  • Direct Connect Conversations-pairs patients/caregivers for one-on-one conversations.

Angelman Syndrome Foundation provides:

  • Counseling services are available for no charge to families in the United States affected by Angelman syndrome.
  • Mental health resources tailored to high-need audiences who often face difficulties accessing effective support systems- this includes single parents, families residing in rural areas, Spanish-speaking families, and those who have experienced the loss of a loved one with Angelman Syndrome.

DreamSickleKids Foundation provides:

  • Rare Mental Health Support Group for Patients (children and adults) with Sickle Cell Disease.
  • Uninsured individuals with discounted therapy services.

Erdheim-Chester Disease (ECD) Global Alliance provides:

  • A virtual chat and webinar programs to provide social support, education, and mental health support to patients, caregivers, and grieving family members affected by ECD.

Foundation for Sarcoidosis Research provides:

IGA Nephropathy Foundation provides:

  • Resources on self-care, coping with stress, and mental health.

NephCure provides:

  • Virtual support groups-Peer Connections Adult Support Group and NephCureTeens for ages 13-17 years.

  • Patients Connections support group for patients and caregivers that is designed to connect individuals to find meaningful connections within the group via email or phone. This personalized approach considered various factors such as specific geographical area, diagnosis, symptoms, complications, and age.

Our Odyssey provides:

  • A weekly virtual program focused on therapeutic art-making to support the mental health of young adults with rare diseases, ages 18-35, disproportionately impacted by mental health issues such as anxiety, depression and isolation.
  • Alternative avenues for communication, expression, and connection through artistic outlets- these creative channels offer support to individuals who may find it challenging to express and discuss their mental health openly.
Post by Rare Disease Diversity Coalition
May 24, 2023