Patient Organisations

This page brings together the contact details of PCD patient organisations and support groups from across Europe and beyond. Whether you are looking for local support, opportunities to connect with other families, or ways to get involved in advocacy and awareness, these groups can offer guidance and community.

European Lung Foundation

Logo of the European Lung Foundation, featuring a blue circle with a gold tree and the text 'ELF' and 'European Lung Foundation'.

Contact info@europeanlung.org

Website

Belgium

Cartoon of two children, one holding a pink model of lungs, with text 'dyskinesia.be' underneath.

Dyskinesia A.S.B.L

Contact Busoni Gwénael

Facebook

Bulgaria

Logo for Primary Ciliary Dyskinesia, featuring a stylized cilia illustration and text.

Първична цилиарна дискинезия / Синдром на Картагенер

Contact Stela Asadurova

Facebook

Cyprus

Graphic featuring lungs with a tree-like structure, surrounded by the text "PCD CYPRUS BREATHING TOGETHER" with a dotted border.

“Breathing Together” Cyprus Association for Patients with Primary Ciliary Dyskinesia and Kartagener Syndrome

Contact Iliana Georgiou, Sergia Moustaka

Website

Czech Republic

Logo with a central yellow shape surrounded by black star shapes above the text 'Řasinka Z.S.'

Řasinka z. s.

Contact Lucie Nechybová

Website

Finland

Red and white tulip logo with stylized abstract petals.

The Organisation for Respiratory Health in Finland (Hengitysliitto ry)

Contact Marika Kiikala-Siuko

Website

France

Logo for the Dyslexia Association with stylized white lungs featuring blue, pink, and green branches, and text in black that reads 'dyslexia association' in English and Romanian.

ADCP Association

Contact Isabelle Cizeau

Website, Facebook

Georgia

Light blue logo with large intertwined letters 'P' and 'D' in the center, surrounded by circular text in a different shade of blue.

Primary Ciliary Dyskinesia Association Georgia

Contact Tamar Makhatadze

Facebook

Germany

Blue logo with white stylized waves and German text 'leben mit PCD'

Kartagener Syndrom und Primäre Ciliäre Dyskinesie e.V.

Contact Benedikt König

Website, Facebook

Netherlands

Logo for PCD Belangengroep with black text on a blue background.

PCD Belangengroep

Contact P. Moormann, J. Plat, T. Visser-Hoogeslag

Website

Norway

Logo with blue circle and white "Cf" initials above the text "Norsk forening for cystisk fibrose".

Norsk forening for cystisk fibrose (PCD)

Contact Ellen Damhaug Scheel

Website, Facebook

Italy

Logo for A.I.D. Kartagener A.P.S., featuring stylized butterfly wings and blue text.

Associazione italiana discinesia ciliare primaria - sindrome die Kartagener Aps

Contact Sara Bellu

Website

Poland

Close-up of a circular saw blade with the logo 'Helical' below it.

Polskie Towarzystwo Dyskinezy Rzęsek‍ ‍

Contact Rusłana Słowik

Website, Facebook

Sweden

A logo with a DNA helix integrated with a tree made of leaves, accompanied by the text "PCD Sverige" and "Primär Ciliär Dystkinesi" on a light green background.

PCD Sverige / PCD Sweden

Contact info@pcdsverige.se

Website‍ ‍

Logo with a yellow butterfly at the center, surrounded by the words 'Cystisk Fibros Riksförbundet' in a circular arrangement, and a stylized 'Cf' at the top in blue.

Riksförbundet Cystisk Fibros (RfCF)/ Swedish Cystic Fibrosis Association

Contact info@rfcf.se

Website, Facebook

Spain

Logo with the text 'DC PES' in blue capital letters.

Asociación Nacional de Pacientes con Discinesia Ciliar Primaria DCP España/PCD Spain

Contact Trini López

Website, Facebook, Instagram

Switzerland

Blue logo featuring wavy lines and the text 'leben mit PCD'

Sebsthilfegruppe Kartagener Syndrom und Primäre Ciliäre Dyskinesie Deutschschweiz

Contact Claudia Schmid, Hansruedi Silberschmidt

Part of the Kartagener Syndrom und Primäre Ciliäre Dyskinesie e.V.

Turkey

Logo of Silyader, a first silver lung disease association, featuring stylized lungs with leaf sprouting from the top.

PCD Supportprimer silyer diskinezi derneǧi (SiLYADER)

Contact Besey Özsoy

United Kingdom

Graphic with three colored horizontal bars and the words 'PCD Support UK' in large blue letters to the right. The top bar is light blue with dark blue shapes, the middle bar is peach with dark blue shapes, and the bottom bar is yellow with dark blue shapes.

PCD Support UK

Contact Michelle Forsythe

Website, Facebook

Australia

Logo with the text 'PCD Australia Primary Ciliary Dyskinesia' in blue and red, featuring a stylized swoosh design.

PCD Australia

Contact Catherine Kruljac

Website, Facebook

Lung Foundation Australia logo with a green stylized lung and black text.

Lung Foundation Australia

Website

Brasil

Associação Brasileira de Discinesia Ciliar Primária - DCP Brasil 

Contact contato@dcpbrasil.org, convivendocomdcp@gmail.com

Website, WhatsApp, Instagram, Facebook, YouTube

United States of America

The logo of PCD Foundation with a blue circular background, the letters P, C, and D, and the word 'FOUNDATION' beneath.

PCD Foundation

Contact Michele Manion, Lynn Ehrne

Website, Facebook, PCDF Connect (Facebook)

Logo of running On Air: Colorful graphic of a butterfly with blue, green, purple, and black wings, and a black body, on a black background.

RunningOnAir

President and Founder Mary Rose Kitlowski

Website