Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
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My daughter was diagnosed with Harlequin syndrome as an infant. At first the frequency of her face getting flush would be rare, however now that she is a lot more active it seems to happen more, and she does not have to be doing anything as far as activity goes. Will this continue to the point that her face will never be plain? Is it possible that she feels it? She will lightly hit her face sometimes as is starts to get red. Is there a treatment? How rare is this? Is it genetic or is it a development of nerves as she grew in my womb? See answer