Finding Your Way After Your Child Is Diagnosed With a Rare DiseaseI remember being in the doctor's office and hearing my son would most likely never walk. As his mom, even though there...reactionscomments
Finding Joy While Raising a Child With a Rare DiseaseIt's hard to remember what my life was like before having a child with a rare disease. I became the caregiver of...reactions2comments
Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the HomeEvery day, parents and caregivers of children with rare diseases face emotional, financial, and logistical challenges. These challenges force us to make...reactionscomments
Caring for a Child With a Rare Disease: Conventional Versus Specialized EducationSending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope...reactions3comments
Job-Seeking as a Caregiver for a Child With a Rare DiseaseFinding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...reactionscomments
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for...reactionscomments
Why Caregivers Feel IsolatedBeing a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is...reactionscomments
Parental Partnership: Supporting Families With a Child Affected by a Rare DiseaseWhen I became a mother at 26 years old and my husband a father at 27 years old, we learned that the...reactionscomments
Embracing Diverse Coping Mechanisms as Parent CaregiversAs a parent caregiver raising a child with a rare disease, my journey has been filled with different challenges, victories, and profound...reactionscomments
Keeping Your Family Connected When Raising a Child With a Rare DiseaseRaising a child with a rare disease extends beyond medical hurdles – it encompasses emotional and familial challenges. The impact ripples through...reactionscomments
From One Caregiver to Another: What I Learned After My Child's Diagnosis"You are not alone." These are the 4 most common words I choose to tell another caregiver. I know how heavy it...reactionscomments
The Importance of Connecting With Mentors as a CaregiverCaregivers of individuals living with rare diseases often find themselves navigating uncharted territory. The complicated medical needs, limited treatment options, and lack...reactions5comments
Managing Overstimulation as a ParentOverstimulation occurs when sensory input overwhelms an individual's ability to process and respond appropriately. For medical caregivers and families, overstimulation can be...reactionscomments
20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to ResilienceBeing a caregiver for someone with a rare disease is an incredibly rewarding yet demanding role. Learning how to advocate for my...reactionscomments
Finding Your Advocacy Voice: Embracing a Safe CommunityAs caregivers, warriors, and allies for individuals with rare diseases, finding our advocacy voice is crucial to raising awareness, promoting understanding, and...reactions4comments
Balancing Work and Caregiving: Parenting Kids With Special NeedsEvery morning, I wake up with a familiar sense of déjà vu as I feel like I have barely closed my eyes...reactionscomments
Who Am I? A Journey About IdentityNot long ago, I had a conversation with my daughter that caught me off guard, though not for the reasons one might...reactions3comments
Navigating Overnight School Trips When Your Child Has a Rare DiseaseAs a parent of a child with 2 chronic conditions, preparing my daughter for an overnight school field trip without me was...reactions2comments
Early Intervention Gave Me HopeWhen I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I...reactions1comment
My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease...reactions3comments
