Chairs of the BEAT-PCD CRC
Prof Amelia Shoemark
Prof Myrofora Goutaki
For information about the BEAT-PCD CRC and how to join, please contact: BEATPCD@ersnet.org
Patient Organisations
European Lung Foundation (ELF)
ELF is a patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment and care.
Lung Foundation Australia
PCD Patients Support Groups
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Първична цилиарна дискинезия / Синдром на Картагенер
It's a support group for patients with PCD in Bulgaria and we use our Facebook page to communicate.
Contact: Stela Asadurova
Social Media: Facebook
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Organization Name: Řasinka z. s.
Řasinka z. s. is a non-profit patient organization based in the Czech Republic. We support children and adults affected by Primary Ciliary Dyskinesia (PCD) and their families. Our mission is to promote awareness, provide psychosocial support, and advocate for better access to diagnosis and care.
Contact: Lucie Nechybová, Chairwoman -
The Organisation for Respiratory Health in Finland (Hengitysliitto ry)
The Organisation for Respiratory Health in Finland seeks to promote respiratory health and the quality of life of people with respiratory diseases. It organises national and regional peer meetings for people with rare pulmonary diseases advises and guides patients with rare pulmonary diseases.
Contact: Marika Kiikala-Siuko
Website: www.hengitysliitto.fi
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Primary Ciliary Dyskinesia Association Georgia
Support group for patients with PCD in Georgia
Contact: Tamar Makhatadze
Social media: Facebook
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PCD Belangengroep
PCD Belangengroep is a support group for patients with PCD in the Netherlands.
Contact: P. Moormann, J. Plat, T. Visser-Hoogeslag
Website: https://www.p-c-d.org/
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Associazione italiana discinesia ciliare primaria - sindrome die Kartagener Aps
It is an association for people with PCD in Italy that aims to support patients and scientific research and connect to the PCD community.
Contact: Sara Bellu
Website: https://www.pcdkartagener.it/
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Asociación Nacional de Pacientes con Discinesia Ciliar Primaria DCP España/PCD Spain
DCP España/PCD Spain is a non profit association of patients with PCD and/or Kartagener Syndrome at a state level.
Contact: Trini López
Social media: Facebook
Website: https://dcpes.org/asociacion/
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Sebsthilfegruppe Kartagener Syndrom und Primäre Ciliäre Dyskinesie Deutschschweiz
Support group for people with PCD in the German-speaking part of Switzerland. Also part of the Kartagener Syndrom und Primäre Ciliäre Dyskinesie e.V.
Contact: Claudia Schmid, Hansruedi Silberschmidt
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PCD Supportprimer silyer diskinezi derneǧi (SiLYADER)
SiLYADER is a support group for patients with PCD in Turkey
Contact: Besey Özsoy
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PCD Australia
PCD Australia is a registered charitable organisation and support group . We support individuals and families with Primary Ciliary Dyskinesia in Australia and facilitate fundraising for research and awareness.
Contact: Catherine Kruljac
Social Media: Facebook, Twitter
Website: www.pcdaustralia.org.au
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Dyskinesia
Dyskinesia is a support group for patients with PCD in Belgium.
Contact: Busoni Gwénael
Social Media Facebook
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“Breathing Together” Cyprus Association for Patients with Primary Ciliary Dyskinesia and Kartagener Syndrome
The mission of Breathing Together is to improve the quality of life of those affected by PCD and to develop the means to find a cure.
Contact: Iliana Georgiou, Sergia Moustaka
Social media: Twitter
Website: https://www.pcdcyprus.com/
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ADCP Association
ADCP Association's main purpose is to help patients with primary ciliary dyskinesia as well as their loved ones (parents, caregivers, etc.). We offer them a website, publications and regular workshops in video-conference.
Contact: Isabelle Cizeau
Social media: Facebook
Website: https://www.adcp.asso.fr/
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Kartagener Syndrom und Primäre Ciliäre Dyskinesie e.V.
We are a Support Group for people with PCD and their families. We offer workshops for patients and medical staff, supply information for different groups of interest and support research in the field of PCD.
Contact: Benedikt König
Social media: Facebook
Website: https://www.kartagener-syndrom.org/
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Norsk forening for cystisk fibrose (PCD)
The Norsk forening for cystisk fibrose is the CF-organization in Norway, which also includes PCD.
Contact: Ellen Damhaug Scheel
Social media: Facebook
Website: www.cfnorge.no
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Polskie Towarzystwo Dyskinezy Rzęsek
Polish Ciliary Dyskinesia Society (PCDS) is a non-profit organization that supports people with Primary Ciliary Dyskinesia (PCD) and their families.
Contact: Rusłana Słowik
Website: http://ptdr.org.pl/
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PCD Sverige / PCD Sweden
PCD Sverige / PCD Sweden is a nationwide non-profit association supporting individuals and families living with primary ciliary dyskinesia in Sweden.
Contact: info@pcdsverige.se
Website: www.pcdsverige.se
Riksförbundet Cystisk Fibros (RfCF) / Swedish Cystic Fibrosis Association
The Association's purpose is to facilitate, assist and improve the situation of people with cystic fibrosis (CF) and primary ciliary dyskinesia (PCD) and their relatives. PCD was included in the association in 1998.
Contact: info@rfcf.se
Website: www.rfcf.se
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PCD Support UK
The PCD Family Support Group UK is a charitable organisation supporting individuals and families with Primary Ciliary Dyskinesia in the UK.
Contact: Lucy Dixon, Katie Dexter
Social media: Facebook, Twitter, Instagram
Website: www.pcdsupport.org.uk
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PCD Foundation
The mission of the PCD Foundation is to improve the quality of life of those affected by primary ciliary dyskinesia (PCD), accelerate research and develop the means to find a cure.
Contact: Michele Manion, Lynn Ehrne
Social media: Facebook, Instagram, Twitter, PCDF Connect (Facebook)
Website: www.pcdfoundation.org
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Additional Groups
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ERN-LUNG is a patient-centric network of European healthcare providers and patient organisations, committed Europe-wide and globally to reducing morbidity and mortality from rare lung diseases in people of all ages through patient care, advocacy, education, research and knowledge-sharing.
Website: https://ern-lung.eu/
Contact: info@ern-lung.eu
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EMBARC - The European Bronchiectasis network
EMBARC India - The Indian Bronchiectasis Registry
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CRC Chairs: Anne Chang (Australia) & Ahmad Kantar (Italy)
Website -
President and Founder: Mary Rose Kitlowski
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