Welcome - Pontine Tegmental Cap Dysplasia (PTCD) Community

What is Pontine Tegmental Cap Dysplasia (PTCD) ?

Pontine tegmental cap dysplasia (PTCD) is a non-progressive disorder characterized by significant developmental delay, cranial nerve dysfunction, and malformation of the hindbrain. Individuals with PTCD may have a collection of medical and devlopmental problems including: hearing impairment, ataxia, language and speech disorders, feeding and swallowing difficulties, heart malformations and facial paralysis. The cause of this condition is unknown.The severity of the medical problems varies among patients. Some patients have a good long-term prognosis with normal intelligence and partial speech.To date, the condition has been identified in less than 20 patients.


Source: National Institutes of Health

Pontine Tegmental Cap Dysplasia (PTCD) Resources

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Our story

by athenatroy published 7 months ago
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Eve Troy is a vivacious, bright, engaging, and spirited three year old. She was born on December 29, 2010 in San Diego, California. Over the cou...

The Fight for Finn.

by RareConnect team published over 2 years ago
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Finn Lee Dononvan Johnson was born a perfectly healthy little boy at 3:23pm on Saturday 8th January 2011. At around 4 days old we were re-admitted ...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.