About Pcd family support group
PCD Family Support Group: Providing a Helping Hand to Those Affected by Primary Ciliary Dyskinesia
Primary Ciliary Dyskinesia (PCD) is a rare genetic disorder that affects the cilia, tiny hair-like structures that line the respiratory tract, sinuses, and ears. PCD can cause chronic respiratory infections, hearing loss, and infertility. It is estimated that 1 in 15,000 people are affected by PCD worldwide.
The PCD Family Support Group is a UK-based charity organization dedicated to providing support and information to individuals and families affected by PCD. The group was founded in 2000 by parents of children with PCD who recognized the need for a support network for those affected by this rare condition.
The mission of the PCD Family Support Group is to improve the quality of life for individuals with PCD through education, advocacy, and support. The group provides a range of services including:
- Information resources: The group maintains an extensive library of information on all aspects of PCD including diagnosis, treatment options, research updates and more.
- Online community: The group hosts an online forum where members can connect with others affected by PCD from around the world.
- Regional groups: The group has established regional groups throughout the UK where members can meet face-to-face for support and social events.
- Annual conference: The group hosts an annual conference which brings together leading experts in the field of PCD as well as patients and families affected by this condition.
In addition to these services, the PCD Family Support Group also works closely with healthcare professionals to raise awareness about this condition among medical professionals. They provide training sessions for healthcare professionals on how to diagnose and manage patients with this rare disease.
The work done by the PCF Family Support Group has been instrumental in improving outcomes for individuals living with primary ciliary dyskinesia. Through their efforts they have helped raise awareness about this condition, provided support and information to those affected by it, and helped to improve the quality of life for individuals with PCD.
If you or someone you know has been diagnosed with primary ciliary dyskinesia, we encourage you to reach out to the PCD Family Support Group. They are a valuable resource for information, support and advocacy for those affected by this rare condition.