Experiences
In the company of
heroes, dreamers, advocates, guardians, researchers, allies, families, fighters, groundbreakers, rare.
Hear from others like you.
![](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/09/LC-FAOD-350x280.png)
LC-FAOD Community Voices
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“We may be kilometers apart, but I’m walking the same path as you.”
![Victoria, a young girl with LC-FAOD poses with her mother, Myriam](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Myriam_Victoria-350x280.jpg)
Myriam and Victoria
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“We are parents, not doctors, but we fight for our children.”
![Ann, an woman with brown hair, smiles, looking away from the camera](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/ann_main-350x280.jpg)
Ann
Tumor-induced Osteomalacia (TIO)“It’s okay to say, ‘I’m having a really hard time,’ but within that to say, ‘Are there little things I could do to start to make it better?’”
![Regina, an older woman with brown hair, smiles at the camera](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Regina-350x280.png)
Regina
Creatine Transporter Deficiency (CTD)“It takes a village to raise a kid, and in my experience with rare disease, it’s actually taken several villages.”
![](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Mason-image-350x280-1.png)
Mason
Angelman syndrome (AS)“I’m incredibly hopeful for what the future holds and excited to brag about all of Mason’s future accomplishments.”
![](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Kelly-and-Colin-photo-2-AS-350x280.jpg)
Colin
Angelman syndrome (AS)“While Colin continues to put in the work to be the best he can be, our community continues to fundraise and push research in a forward direction.”
![Marah, smiles big at the camera while out on a walk](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Marah-cropped-350x280.jpg)
Marah
X-linked Hypophosphatemia (XLH)“Nobody has the same story, but I hope siblings of those with rare conditions will take comfort in knowing that they are not alone.”
![Franco smiles into the camera and holds peace signs up with both hands, his shirt reads “We Are Rare”](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/franco-332x280.jpg)
Franco
Creatine Transporter Deficiency (CTD)“We don’t know where this new path is going to take us, but we will be with him every step of the way.”
![Jake, a young adult with an LC-FAOD, and his mom Michelle look at each other and smile](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Michelle_and_Jake-350x280.jpg)
Michelle and Jake
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“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.”
![Braylee, a young girl, about 4-5, with dirty blonde hair wearing scrubs smiles into the camera and shows off a craft that she’s made](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Braylee-350x280.jpg)
Braylee
Long-chain Fatty Acid Oxidation Disorder (LC-FAOD)“As parents, our goal was to make sure Braylee knew about her body and understood that everyone is different.”
![](https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/Matthew-and-Helen-MPS-VII-350x280.jpg)
Matthew
Mucopolysaccharidosis Type VII (MPS VII)“He has his own way of communicating with people, including his own language, which his family and very close friends have learned”
![](https://www.ultrarareadvocacy.com/wp-content/uploads/2022/12/Kylie-MPS-VII-scaled-e1668540817362-350x280.jpg)
Kylie
Mucopolysaccharidosis Type VII (MPS VII)“Anyone who meets our youngest daughter Kylie always comments on her beautiful smile and playful nature.”