Lung Disease Week: ATS Webinar on PCD
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Nov 2016

The webinar attendence was phenominal! We're grateful for the opportunity to reach & educate the patient community through ATS. As promised, here is the link from the webinar via ATS.
"As part of Primary Ciliary Dyskinesia Week at the ATS, and in conjunction with PAR partner, PCD Foundation the ATS presented a live webinar on Thursday, October 20th, 2016 at 2pm ET. The webinar entitled "Primary Ciliary Dyskinesia State-of-the-Art: Advances in Diagnosis, Research and Care" and was presented by Adam Shapiro, MD, Pediatric Respirologist, at McGill University/Montreal Children's Hospital and Deepika Polineni, MD, Assistant Professor at the University of Kansas."



Oct 2016

PCD Awareness Week at American Thoracic Society is October 16-22. Please register for a live webinar on Thursday, October 20th, 2016 at 2pm ET. The webinar entitled "Primary Ciliary Dyskinesia State-of-the-Art: Advances in Diagnosis, Research and Care”

Click here to register!



PCDF CARE Day: Boston Children's Nov. 6, 2016
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Please join us for  a CARE (Clinical Centers Awareness and Regional Education) Day sponsored by the Boston Children's and Harvard Medical School Teaching Hospital's Adult Pulmonary Divisions and the PCD Foundation.

Meet Dr. Umakanth Khatwa, Dr. Keenan Haver, Dr. Benjamin Raby- the PCD Center Directors and their colleagues and learn more about goals of the PCD Clinical Centers Network and services offered for families affected by PCD.  There is no cost for this meeting but reservation is required. A light dinner will be served.  Please register by October 31, 2016 at the link below.


Evening Agenda
Welcome and Introduction (Umakanth Khatwa, MD, Kenan Haver, MD & Benjamin Raby,MD)
Living with PCD (PCD parent)
PCD Diagnosis and Treatment (Margaret Leigh, MD)
PCD Foundation Clinical Network (Adam Shapiro, MD)
PCD Foundation: Past, Present and Future (Michele Manion, PCD Foundation)


For more information and registration Click Here!
PCD On The Move 2016: Advances in Primary Ciliary Dyskinesia Research, Diagnosis & Care
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Primary ciliary dyskinesia (PCD) is on the Move! 

Join us in beautiful Minneapolis, Minnesota for the third annual 'PCD on the Move' conference, an information-packed two day meeting highlighting exciting advances in PCD diagnosis and treatment. Be part of the journey with PCD experts as we map out next steps to accelerate research in PCD!

Register information available here !


(1) Enable attendees to optimize clinical care of patients with PCD by providing education, access to experts and hands-on learning opportunities for recent advances in PCD to include:

A.    Improved diagnostic capabilities (nasal nitric oxide, reading biopsies, genetic
B.     Evolving gene identification
C.     Novel phenotypic features/overlapping syndromes
D.     Basic science initiatives that inform our understanding of motile cilia disorders

(2) Encourage expansion of existing clinical care and research networks with the goal of accelerating clinical research trials

(3) Identify clinical research opportunities and prioritize research goals

Who Should Attend:

  • Existing PCD clinical centers personnel
  • Representatives from academic centers interested in becoming part of the PCD network
  • Local/regional clinicians/researchers
  • Allied health professionals and scientists with an interest in PCD
Conference Agenda:

PCD On The Move 2016 Agenda

Hotel Accomodations:

For hotel information and to book a room for the event-



SPONSORSHIP OPPORTUNITIES ARE AVAILABLE! PLEASE CONTACT LYNN EHRNE AT Esta dirección electrónica esta protegida contra spambots. Es necesario activar Javascript para visualizarla FOR MORE INFORMATION.

Call for Scientific Abstracts and Case Reports 2016
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PCD On The Move: Advances in Primary Ciliary Dyskinesia Research, Diagnosis and Care
September 14-16, 2016
Minneapolis, Minnesota



Scientific Abstracts:

Accepted abstracts will be presented in the form of a poster.
Your scientific abstract must contain:
1.  A descriptive title, list of authors and institutions;
2.  An introduction/rationale to the study;
3.  The methods used;
4.  The results of the study;
5.  Conclusions of the study.

Case Reports:

Accepted case reports will be presented in the form of a poster or a 10-minute oral presentation.
Case reports must contain:
1.  A descriptive title, list of authors and institutions;
2.  An introduction;
3.  A description of the case including a detailed description of how the diagnosis was made;
4.  A discussion of the novelty and importance of the scientific case.

Language: The abstract must be submitted and presented in English.

Prior publication: Abstracts which have already been presented at previous meetings can be submitted provided they offer information pertinent to the study of Primary Ciliary Dyskinesia

Funding source: All abstracts must specify the funding source.

Co-authors: It is required that all authors listed on the abstract have knowledge of the abstract submission.

Disclosure: It is required that the primary author disclose any potential conflicts of interest.

Abstract length: The total word count may not exceed 500 words (title, authors’ information, institutions, tables, images, and spaces between words do not count towards the 500 word count).

Abbreviations: Abbreviations should be spelled out on the first occurrence in the text.

Tables/Images: You may include 1 table or figure.


Five case reports will be selected for oral presentation during a Fellows Case Report session on Thursday, September 15.  If your case report abstract is chosen for an oral presentation, the presenter will receive a scholarship to cover travel, lodging, food and registration costs.


Two poster presentations will be recognized for exceptional merit at the conclusion of the poster session and will receive a $250 cash award.  Awards will be based on both scientific content and poster presentation. 


  • Accepted scientific abstracts will be presented as a poster presentation
  • Accepted case reports will be assigned as either an oral or a poster presentation
  • The person assigned as the presenting author will be expected to present at the conference
  • Authors assigned to a poster presentation will be expected to display illustrative material in the form of a poster
  • Authors assigned to an oral presentation will be expected to prepare and 10-minute presentation with Power Point visual aids.  This will be followed by a 5-minute question and answer period.
  • Oral and poster presentations will take place in the afternoon on Thursday, September 15, 2016. 


Posters will be displayed throughout the conference.  Poster set-up and take-down instructions will be provided on-site.  Posters must be formatted to one of the two following dimensions:

• 48”w x 36”h (122cm w x 91cm h)
• 60”w x 36”h (152cm w x 91 cm h)

Please note: The PCD Foundation will not be responsible for posters left at the end of the meeting on Friday, September 16, 2016.


Abstracts are to be submitted in Microsoft Word Format to the PCD Foundation c/o Lynn Ehrne at Esta dirección electrónica esta protegida contra spambots. Es necesario activar Javascript para visualizarla

Notification of abstract acceptance or rejection will be sent electronically to the presenting author within a few days of the deadline.

The body of the email must contain the following information:

  • Name of presenting author
  • Address, email address and phone number of presenting author
  • Title of abstract


Friday, July 22, 2016
5:00 PM, Eastern Time

PCDF Clinical Centers Network
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The PCD Foundation Clinical and Research Centers Network

Ultimately, it is the goal of the PCD Foundation to find a cure for PCD. This will require significant investment in research and, because we are a small patient group, the participation of as many affected individuals as possible. To facilitate participation, we and our international partners are dedicated to creating networks of PCD centers ito serve as focal points for diagnosis, research, treatment and data collection (patient registry). To this end, we are proud to announce the creation of The PCD Clinical Centers Network!

This network builds on th existing Genetic Disorders of Mucociliary Clearance [Research] Consortium (GDMCC). GDMCC sites will continue their role as research centers, as well as serving as referral sites for diagnostic and clinical visits under the new PCD Foundation Clinical Centers Network. With over a decade of experience working as an expert network, GDMCC sites will also provide invaluable mentoring services for newer sites joining the network.


Genetic Disorders of Mucociliary Clearance Research Sites (note: most, but not all of these research sites also see patients for non-research clinical visits):



PCD Clinical Network Full Sites

PCD Clinical Network full sites are sites that have met the mandatory requirements to be recognized as a PCD Clinical Center site, including:

-Submitted an application for review and approval by our Clinical Centers Committee
-Identifying a multi-disciplinary team to care for PCD patients

-Ensured access to complete diagnostic services to include ciliary biopsy and nasal nitric oxide measurements
-Agreed to required training, ongoing education and site auditing visits

PCDF Clinical Centers Affiliate Sites

Affiliate sites have submitted an application to be full sites, but may not have all the required resources in place right now, for instance, may not have resources to invest in expensive diagnostic equipment or may not have all required staffing covered at this time. Affiliate sites work cooperatively with full sites and are first in line to be added as full, accredited sites


Stay tuned for developments on this exciting and growing network!



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