What support groups are there for people who have paragangliomas?
There are many great support groups for individuals who have paragangliomas such as Know Pheo Para, Pheo Para Alliance, and facebook groups.
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How do I find other people who have paragangliomas?
Although paragangliomas are rare, there are many people who are affected by them. You can meet others through support groups, foundations, and functions. A start might be to talk to a doctor about any local families interested in talking or reaching out to the support groups. Some options include: such as Know Pheo Para, Pheo Para Alliance, and facebook groups.