10 Empowering Tips to Prepare Your Child Living With a Rare Disease for CollegeI want to talk to you about something close to my heart – preparing your high school child living with a rare...reactions5comments
From Heartbreak to Hope: Turning Our Rare Disease Journey Into a MissionOur rare disease journey began with concerns that the pediatrician dismissed as normal quirks. My child was slow to reach milestones, but...reactions1comment
Life as the Primary Caregiver: Insights from a Rare MomIn the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love...reactionscomments
Fertility Preservation for Rare Disease WarriorsIn a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden...reactionscomments
How to Care for Someone With Congenital Adrenal HyperplasiaCaring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic...reactionscomments
Dear Caregiver...As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything...reactions5comments
Parenting a Child With a Rare Disease and Reflecting on the Power of PauseThe day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story...reactions3comments
Embracing Mindfulness: 31 Affirmations for Rare Disease CaregiversReflecting on the past year, I realize that last year was a test of self-discovery, leading me down a path I never...reactionscomments
Caring for a Child With a Rare Disease: Vacations? What Are They?As parents, we cherish the moments when we can create lasting memories with our children, especially during vacations. However, for those of...reactions1comment
Life as a Rare Disease Parent: My Motherhood JourneyMy motherhood journey has come with many unique challenges that most other mothers cannot relate to. It’s been a deep journey that...reactionscomments
Big Moves for Better CareIn 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly...reactions3comments
5 Rare Life Challenges: A Caregiver PerspectiveAs a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely...reactionscomments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease CaregiverMy 3 children are nothing alike. My oldest is a sweet and laid-back growing boy who is medically complex and living with...reactionscomments
Working Remotely as a CaregiverWork is a place where you can meet people, make connections, and socialize. But in this new era of working from home...reactionscomments
What It Means to Celebrate Moments as a Rare Disease FamilyOn my journey, celebrating milestones isn't just about the milestone itself. It's also about our family's journey leading up to it. It's...reactionscomments
10 Reasons Why Students With a Rare Disease Should Consider a 504 PlanAs a caregiver for my daughter, who lives with challenges from a rare disease, I strive to protect her at home and...reactions4comments
My Experience With New Jersey's Personal Preference ProgramHave you heard of state Medicaid programs that allow a family member or friend to become a paid caregiver? New Jersey's Personal...reactionscomments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your ChildIf you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them...reactionscomments
Parenting and Rare Disease: A Journey Through Grief and AcceptanceThe day my amazing little boy was born, I knew he was different. I was 22 years old and forced to grow...reactionscomments
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral PalsyThe best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people...reactionscomments
