Five Resources For Grieving

August 22, 2023

August 30 is National Grief Awareness Day. As there are many types of grief and no two people have the same grief journey, our RARE Concierge Patient Services team has curated resource that may provide you with information and solace for your unique path.

We know that there are a variety of types of grief for those living with or affected by rare disease:

  • searching for a diagnosis
  • accepting a diagnosis
  • finding the most effective treatment options
  • navigating the clinical trial process
  • Grieving the life you had or the aspirations you had for what your child’s life would have been.
  • experiencing loss within your community
  • mourning the loss of a loved one

RARE Revolution Survey: Supporting Families Through Bereavement

RARE Revolution surveyed families who lost a loved one to a rare disease, and created this resource blog to help families in a similar situation. Subjects included:

  • the relativity of time
  • avoid avoidance and overstepping
  • the small stuff matters
  • finding support
  • brighter days ahead
  • advice for the journey


When the Grief That Comes With Rare Disease Is Exhausting

Katy Baker, a podcaster living with Scimitar Syndrome, outlines how the five traditional stages of grief (denial, anger, bargaining, depression, and acceptance) come into play with a rare disease diagnosis or change in prognosis, in this blog featured on The Mighty. Her explanation of each stage of grief, and how someone affected by a rare disease, whether patient or caregiver, helps to provide validation for how you may be feeling. 


Grieving a Diagnosis 

Nikki McIntosh, mother to a son with SMA, talks about the various stages of grief that before, during, and after a rare disease diagnosis in her RARE Mamas blog post:

  • The Wondering
  • The Waiting
  • The Reckoning
  • The Wailing
  • The Wandering
  • The Work
  • The Awakening

Read an excerpt from her blog:

You have to let yourself grieve. You have to deal with your grief directly. All of that sadness has to come out. If you hold it in, you’ll explode. And if you let the sadness beat you down, you’ll implode. Don’t repress it. Don’t suppress it. Release your grief so your heart can begin to heal. If you haven’t already, give yourself the time to truly grieve.

It’s Okay That You’re Not Okay 

Effie Parks, host of the Once Upon a Gene podcast (and Community Engagement Coordinator for Global Genes), talks to Megan Devine, author of It’s Okay That You’re Not Okay. Effie and Megan talk about:

  • misconceptions around grief
  • why not every problem should have a solution
  • how to normalize grief
  • how to support someone who is grieving


Navigating Grief and Trauma

In this Lunch & Learn for Global Advocacy Alliance members, Ronda Thorington, Licensed Professional Counselor, talks about:

  • The impact that ambiguous grief and medically-induced PTSD has on families 
  • Specific strategies to help empower families experiencing grief and trauma 
  • Signs that a family may be in need of additional supports and next steps.


If you have any questions, require support during a difficult time, or simply need assistance, please contact our RARE Concierge Patient Services team.

RARE Concierge Patient Services

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