Having a rare disease, or a family member with a rare disease, can be expensive. Management often requires multiple visits to specialists. Medication and medical equipment are not always covered…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a story on msn.com, Alijah Cunningham is living with the rare disease Apert syndrome, resulting in the bones of his toes and fingers fusing together. Now three years…
When Ashley and Connor Henderson received news that they were pregnant, the family was overjoyed. After all, the Henderson family already had Liam and was hoping to add another child…
July is national Cleft And Craniofacial awareness and prevention Month! While one of the fruits of summers is time off from school, shortened summer hours, or sunny vacations - it's…
June is Apert Syndrome Awareness Month! As summer sets in, let's take a moment to learn a little more about this rare disease and do our part to raise some…
According to a story from wave3.com, time was running out for Leyan Albazzour, who is nine years old. Born in the Palestinian city of Ramallah, the treatment for her Apert…
Jacob Engram, a twenty-one year old high school student with Apert syndrome, became the first junior officer for the city of Vicksburg. Read more about this story in The Clarion. Apert…
A new film coming out this month will change the way you think about Apert Syndrome and similar disease. Keep reading to learn more about the film, or follow the…
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