Every person’s experience with a rare disease is unique, yet sharing personal perspectives can be extremely valuable to others living with the same condition.

We are proud to present the journeys below, which bring to life the daily challenges, perseverance, and bravery of people living with rare diseases.

If you would like to share your personal story, please click here to contact us.

Use the dropdown to sort by condition:

Marah

A Sibling’s Journey

Change in Perspective
“Nobody has the same story, but I hope siblings of those with rare conditions will take comfort in knowing that they are not alone.”
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Franco

Raising a child with CTD

Strength in Family
“We don’t know where this new path is going to take us, but we will be with him every step of the way.”
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Michelle and Jake

Managing LC-FAOD Together

An Invisible Disease
“It’s a very complicated disease, and it can be frustrating, but I couldn’t ask for a child to deal with this any better.”
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Braylee

Raising a child with LC-FAOD

Facing the Unknown
“As parents, our goal was to make sure Braylee knew about her body and understood that everyone is different.”
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Helen

An MPS VII Parent

The Power of Positivity
“He has his own way of communicating with people, including his own language, which his family and very close friends have learned.”
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Cheryl

Living with XLH

Staying Positive
“Having a rare disease, I can’t control my symptoms, but I can control my attitude.”
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Tasia

Living with LC-FAOD

Learning to Manage My FAOD
“I see kids who are struggling the same way that I did, and just being able to be a beacon of hope for them, that in itself really helps me.”
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Dan

Living with TIO

The Challenge of Misdiagnosis
“At 50 years old, I was a healthy, strong workaholic – until everything changed.”
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David

Living with XLH

Living Life to the Fullest
“My condition did not limit me prior to the diagnosis, and I was determined that it would never hold me back.”
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Eileen

Raising a Child with LC-FAOD

Letting My Child Spread His Wings
“My biggest challenge is slowly, but surely, letting my teenager take over his own care. I don’t know what the future will bring, but it is my duty to help him be independent.”
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OTC

Ornithine Transcarbamylase Deficiency

Coming Soon
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GSDIa

Glycogen Storage Disease
Type Ia

Coming Soon
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Wilson Disease

Wilson Disease

Coming Soon
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GSDIII

Glycogen Storage Disease
Type III

Coming Soon
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