Contact

Dyskinesia

Dyskinesia is a support group for patients with PCD in Belgium.

Contact: Busoni Gwénael

Social Media Facebook

“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

Social media: Twitter

Website: https://www.pcdcyprus.com/

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/

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: Saskia Meye

Social media: Facebook

Website: https://www.kartagener-syndrom.org/

Norsk forening for cystisk fibrose (PCD)

The Norsk forening for cystisk fibrose is the CF-organization in Norway, which also includes PCD.

Contact: Gea Restad

Social media: Facebook

Website: www.cfnorge.no

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/

Swedish PCD Support Group

Contacts: Tanja Hedberg, Barbro Trollerud & Jennie Veileby

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 1998.

Contact: info@rfcf.se

Website: www.rfcf.se

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

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

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

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

ePAG

ePAG it's a support group for patients with PCD in Georgia.

Contact: Tamar Makhatadze

Social media: Facebook

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/

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/

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/

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

PCD Supportprimer silyer diskinezi derneǧi (SiLYADER)

SiLYADER is a support group for patients with PCD in Turkey

Contact: Besen Ozsoy

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