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Global Genes and Cure JM Foundation: expanding mental health support for the rare disease community

Even when treatments and therapies for rare diseases are available, symptoms like depression, anxiety and stress can halt or slow the progress those therapies are trying to achieve. Global Genes is partnering with Cure JM Foundation to provide the community with mental health resources that will support patients and caregivers, and providers, too—they hope to help more medical providers see that mental health is part of an individual’s overall health

By Charlene Son Rigby, CEO of Global Genes

The unmet needs around mental health in rare disease

One of the unmet needs around mental health is the lack of mental health providers with the experience needed to treat the medical trauma often associated with living with a chronic rare disease.

Patients and caregivers living with rare diseases experience higher levels of stress, anxiety and depression, as well as other mental health challenges such as isolation, guilt, and complex post-traumatic stress disorder (PTSD). Mental health is part of overall health and cannot and should not be ignored, but often medical providers are not addressing this aspect of care.

Parents and caregivers frequently share their concerns and needs with us:

  • “I’m going through a hard time emotionally dealing with my son’s illness. I have no clue as to what to ask for. What the future looks like. What planning do I need to do for his future. All the questions run through my head and it’s like I can’t turn them off.”
  • “My disease has no known cause, cure or plan of care. I am left unable to work, drive or socialise… I know that incorrect information, delays, denials and doctors not hearing my voice have drawn out my care causing further spread and permanent life changes. I’ve lost myself and no one is willing to see my hard work in trying to help myself.”
  • “I’m looking for a therapist familiar with families caring for children with critical rare disease who does teletherapy. Trying to treat caregiver burnout. Trying to help myself.”
  • “Hello, I’m checking to see if Global Genes has some courses or programs for spouses of patients with rare diseases that are going through mental health issues.”
  • “Caregivers need care and support just as much as the one they are caring for.”
  • “I feel like my family is drowning in the burden of my medical conditions.”

A two-year mental health initiative partnership

Global Genes has partnered with Cure JM Foundation on a two-year mental health initiative. Cure JM Foundation serves the juvenile myositis community and others with autoimmune rheumatologic disorders, so its extensive mental health materials are geared toward children, teens and their caregivers.

  • “Your Caregiver Emotional Support Zoom meeting was instrumental in us finding a counsellor for our daughter. The JM mom/counsellor and group facilitator took a few minutes after our meeting to email me information that absolutely helped us in finding someone to treat our daughter after being on a waiting list for more than a year. We are eternally grateful.” – JM parent:
  • “Cure JM’s mental health resources and community have provided me a place where I am surrounded by others who understand what I am going through and make me feel less alone while fighting a disease most of my peers and those around me on a daily basis can never understand. I’ve now been able to provide support to others on pain and mental health, as a peer mentor, and at our annual conferences.” – JM young adult patient, still in treatment after 9 years
  • “Links to articles and webinars on what to look out for and how to support my JDM (juvenile dermatomyositis) child long-term have been helpful!”

Global Genes is looking to adapt and expand those resources for a wider rare disease audience. These may, for example, include tools and resources for recognising signs of depression and anxiety, managing the mental side of pain and promoting the importance of caretakers taking care of themselves, as well as highlighting the different resources that states may be able to provide within the United States.

Another initiative that is being explored is training medical providers on recognising the signs that their patient is experiencing a mental health crisis, and what the appropriate next steps should be.

The partnership between Global Genes and Cure JM Foundation underscores Global Genes’ continued effort to identify and address the evolving needs of the rare disease community. Global Genes’ patient services programmes like RARE Concierge serve as an epicentre of information, resources, support and connections for the rare disease community, including for mental health needs.

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