How Clinical Trials Are Transforming the Future for Rare Disease WarriorsPrior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical stories, such as the notorious Tuskegee experiment, had... By Elle Cole4 min readBookmark for laterReactions 0 reactions Comments0 comments
10 Things I Wish People Understood About Rare DiseasesBeing a caregiver to someone with a rare disease can be a complex journey. It not only alters the life of the person affected, but it also impacts the lives... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
How to Promote Legislative Advocacy for Rare DiseasesCan you imagine living with a condition so rare that it often feels like you are fighting a battle alone? The lack of resources, treatment options, and support can leave... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
Do you allow your child with a rare disease to go on overnight school field trips?If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience? Please share your insights or personal anecdotes below....Reactions 0 reactions Comments0 repliesCaregivingTravel
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 future ahead of us would be characterized by... By Elle Cole4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 daughter gave me a sense of purpose and... By Elle Cole4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 learning experiences. One of the most enlightening aspects... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 thought I would tread. It was the year... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 school. As we prepare for her first high... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 our entire family, influencing relationships and our day-to-day... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 feels to receive the news of a child's... By Elle Cole5 min readBookmark for laterReactions 0 reactions Comments0 comments
