Children's Craniofacial Association (CCA) has posted tips for transitioning to adulthood for those with craniofacial differences. We've summarized some of their recommendations, but you can read the full article here.…
Patricia Simon Patricia Simon was born with a cleft lip and palate. She is now a nurse, a public speaker, a patient advocate, and a writer. She has a great…
As reported in CBS News, sisters Izzy and Ailbhe Keane were graced to be born with a natural partner in crime. Their creative flair and eye for style came naturally.…
According to a story from SELF, Jaime Stathis lives with a rare condition called misophonia, in which certain trigger sounds can cause negative emotional states and outbursts. Jaime discusses how…
Written by Rebekah Palmer We have passed the 30th anniversary of the Americans with Disabilities Act. The landmark legislation that prohibits discrimination of disabled people in public spaces is rarely…
Colton’s Story Debbie Moore was 18 months old when she was diagnosed with X-linked hypophosphatemia (XLH) a rare, deforming, and painful bone disorder. XLH causes softening of the bones…
Twins Iris and Clarisa Valdez recently shared their story of courage and hope and thanked the City of Hope care team for its guidance and support. But most importantly…
According to a story from Newswise, it was more than three years ago that Maxford Brown, 16, awoke one morning feeling out of sorts. Maxford, who lives with Down syndrome,…
When their son Quinton was diagnosed with late-onset Krabbe disease through newborn screening, Laura and Ryan Nitahara were initially full of questions. What was Krabbe disease? How would this affect their family?…
Growing up, I guess you could say I was living my childhood dream. I was very close with my mother, was well liked by my peers, and did pretty decent…
According to a story from Vice World News, the Solanki family, who are residents of Ahmedabad, the largest city in India's western state of Gujarat, recently took action to save…
On October 15th, 2020, the Rare Disease Legislative Advocates (RDLA) held a webinar discussing some of the latest news regarding ongoing legislation that is most relevant to the rare disease…
by Lauren Taylor from In The Cloud Copy A local Florida teenager has inspired her whole city after a sudden diagnosis with a serious neurological condition: Chiari malformation. Jordan Ray…
Dr. Justin Hopkin's son Garrett was born happy and healthy, but when he was around four to six months old, his parents began to notice some problems. Garrett was having…
Patient Worthy has recently begun a partnership with the Glanzmann's Research Foundation, a nonprofit patient organization dedicated to spreading awareness about Glanzmann's thrombasthenia and finding a cure. We spoke with…
HCU Network America is a nonprofit organization dedicated to supporting patients with homocystinuria (HCU) and finding a cure. This October, the group is organizing HCU Awareness Month. With the goal…
Disclaimer: This blog post has been republished with permission from the author. To visit the original blog site, click here. Written by Tamara Fowler June 10. My stem cell coordinator…
Disclaimer: This blog post has been republished with permission from the author. To visit the original blog site, click here. Written by Tamara Fowler Let me begin by saying that…
aHUS Tracking Atypical hemolytic uremic syndrome (aHUS) is a rare disease that causes blood clots to form within the small blood vessels in the kidneys. These clots lead to organ damage…
Disclaimer: This blog post has been republished with permission from the author. To visit the original blog site, click here. Written by Tamara Fowler Dave Kinler and I have walked…
Recently, twenty-two year old Jordan Ray of Wellington, Florida spoke with a reporter from The Palm Beach Post, recounting how her life changed in April 2015 during a softball…
Disclaimer: This blog post has been republished with permission from the author. To visit the original blog site, click here. Written by Tamara Fowler Today was the end of the…
Written by Paul Pavao The power of a cancer patient's good attitude cannot be over-emphasized. Within the first week of chemo a nurse was willing to tell me, "We can…
Disclaimer: This blog post has been republished with permission from the author. To visit the original blog site, click here. Written by Tamara Fowler A few weeks ago, during one…
Disclaimer: This blog post has been republished with permission from the author. To visit the original blog site, click here. Written by Tamara Fowler When faced with your own mortality,…
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