Category Archives: #RAREis Voices

Life As a Mom, Caregiver, Advocate and X-Linked Carrier

August 23, 2023 by #RAREisTeam

Our Journey with Charcot-Marie-Tooth (CMT)

July 13, 2023 by Elizabeth Ouellette

Two Sisters Fighting Two Combined Rare Diseases

May 01, 2023 by Stephanie Madole

#RAREis Beyond the Chart, Because We’re More than Our Diagnosis

January 11, 2023 by Ryan Sheedy

We Get You, We See You

December 07, 2022 by Chris Velona

The Beauty of Being Different

October 26, 2022 by Becky Tilley

Holding onto Hope

September 30, 2022 by Deanna Fournier

We All Want to Matter; We Want to be Seen

September 28, 2022 by Kyle Bryant

The #RAREis Scholarship Fund: Making Dreams Happen

April 15, 2022 by #RAREisTeam

How the #RAREis Scholarship Will Help Me Make a Difference

March 25, 2022 by Samantha Varone

The #RAREis Scholarship Helped Change the Trajectory of My Life

March 22, 2022 by Kellyann Navarre

A Woman With Many Roles

March 02, 2022 by Bruna Rocha Silveira

Find your Tribe and Support Each Other

February 24, 2022 by Kris Pierce

Crafting an Answer to Batten Disease

February 18, 2022 by Kristen Gray

A Dose of Hope

February 11, 2022 by Jon and Shirley Dicks

I Won’t Allow My Rare Disease to Stop Me

February 04, 2022 by Anna Ruiz

Pulmonary Hypertension Phighter

January 07, 2022 by Jessica DelToro

A Diagnosis Doesn’t Define You

December 09, 2021 by #RAREisTeam

If I Can Help in Any Way, I Will

November 19, 2021 by #RAREisTeam

Ask for help, don’t quit and stay positive

November 11, 2021 by #RAREisTeam

What I Would Tell My Younger Self about an X-linked Disorder

August 06, 2021 by #RAREisTeam

Saida Mahoney, a rare disease advocate, wearing a white dress and smiling for a photo on a red carpet with a gray curtain in the background for the California Miss Amazing pageant.

#RAREis Shining a Light on Everyday Struggles

July 30, 2021 by #RAREisTeam

Knowledge is Power: Female Carrier Edition

July 06, 2021 by #RAREisTeam

Tom from Sing Me A Story sits next to Francis and helps him write a story for a song

Five Songs That Inspire the Rare Disease Community

March 26, 2021 by #RAREisTeam

Taylor Kane stands and holds a sign that says "#ALDHero"

The “Carrier” Label: Why Terminology Matters (A Lot)

March 20, 2021 by Taylor Kane

Talking to Your Significant Other About Being a Rare Disease Carrier

February 12, 2021 by #RAREisTeam

Celebrating RARE Champions of Hope Through Song

January 15, 2021 by #RAREisTeam

Goodbye 2020, Hello New Perspective

December 30, 2020 by #RAREisTeam

#RAREis Pursuing Your Passion

December 23, 2020 by #RAREisTeam

The Scariest Part of Being a Rare Young Adult

December 09, 2020 by #RAREisTeam

More than a Major

October 30, 2020 by #RAREisTeam

D.L. Frugé, wife Katie and daughters impacted by rare conditions smile in a family portrait

Choosing Joy in the Face of Adversity

October 09, 2020 by D.L. Frugé

Mom, Kerri Fitzsimmons hugs son, Crosby, who lives with Morquio A Syndrome

Advocating Like a Mother and Inspiring Hope

October 02, 2020 by Kerri Fitzsimmons

Virtually Rare – How to Make New Connections at Home During COVID-19

September 03, 2020 by Laura Bekier

Overcoming Insecurities and Discovering Self-love

August 14, 2020 by Kendra Gottsleben

Traveling with Rare Disease During COVID-19

July 16, 2020 by Jenny Jones

Isolation is a Time for Clarity

May 29, 2020 by Ethan Krenzer

A Rare Mother’s Journey

May 14, 2020 by Ashley Kenny

Being Immuno-compromised in a COVID-19 World

April 24, 2020 by Kathryn Poe

Disability in Rare Spaces

April 10, 2020 by Rebekah Palmer

A Hopeful, Yet Uncertain Future

March 27, 2020 by Taylor Kane

Finding Love With a Rare Disease

February 21, 2020 by Rebecca Lalk

“I Am Not Alone”

December 20, 2019 by Heather Norris

Navigating a Forever Home with a Rare Disease: Daniel’s Story

November 27, 2019 by #RAREisTeam

Starting a Rare Disease Podcast

November 22, 2019 by #RAREisTeam

So Unique, We Were Told He Was the Only One

October 31, 2019 by Ramya Ramaswamy

How Our Odyssey Was Created

October 16, 2019 by Seth Rotberg

Life at Your Own Pace

September 10, 2019 by Jillian Goodwin

Learning to Accept a Rare Disease

August 12, 2019 by Lynzi Russell

Growing Up Rare

August 01, 2019 by Skyler DiPalma