San Francisco Rare Disease Day Event 2015
PDF Imprimir Correo electrónico

There are no translations available.

Attention California and Nevada PCDr's: Here is information about the upcoming Stanford PCD educational event,to be held on February 28th and being hosted by the PCD Foundation and Stanford PCD Clinic. A flyer for more info, an Infection Control Policy, directions and map are attached. Please take a look at all these items.

Heidi Bjornson-Pennell is the event organizer and we really hope you can come if you are anywhere close at all! It is going to be a great day with a lot of experts talking about PCD, a social worker addressing many patient concerns, and an amazing opportunity for some of us to meet one another. Please let Heidi know if you have any questions, and also please rsvp to Jackie Zirbes (number and email is on the flyer) if you can make it! Thank you so much! We hope to see you there!


San Francisco RDD Agenda 2015


Infection Control Guidelines

Are you ready to "Move 4 a Cure" ?
PDF Imprimir Correo electrónico

There are no translations available.

PCD on the Move- Move 4 a Cure! Fundraising Handbook
PCD on the Move! Scientific Conference 2014 Registration and Agenda
PDF Imprimir Correo electrónico

There are no translations available.

PCD is on the Move! 


Please join us in beautiful San Francisco, California for an information-packed two day conference that will bring together leading North American and international PCD experts to discuss exciting advances in PCD, expanding a network of clinical and diagnostic centers and next steps to accelerate PCD research.


Click here for PCD on the Move Conference Agenda--Current

Click here to Register 



(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

(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 with an interest in PCD
Heterotaxy and PCD
PDF Imprimir Correo electrónico

There are no translations available.

There is a great new article about heterotaxy and PCD by Adam Shapiro, MD--a UNC alum who is now at McGill University in Montreal published in Cardiology in the Young*

We have long known of the association between PCD and situs issues, including both situs inversus totalis (everything reversed ) and situs ambiguus (laterality and other defects that are not complete situs inversus), which includes heterotaxy and isomerism syndromes and congenital heart defects. However, because this association has tended to be of more interest to PCD researchers than other specialists, we have really only looked at the incidence of heterotaxy in those already diagnosed with PCD (12.1%). 

Dr. Shapiro wanted to look at this from the other side. Instead of evaluating people with known PCD for heterotaxic defects, he wanted to assess the prevalence of PCD in those with heterotaxy, or at least start an investigation into how many people diagnosed with heterotaxy have symptoms suggestive of PCD. To do this, he worked with the Heterotaxy Hope Organization (H2O--now part of The Heterotaxy Network) to develop and distribute a comprehensive survey about symptoms. In his survey a whopping 37% of heterotaxy patients had symptoms suggestive of PCD. In the four patients on whom they were able do follow up assessments, one was definitively diagnosed with PCD, two were 'probable' PCD. 

This was a small sample and more work needs to be done, but it provides additional evidence that PCD is an overlooked diagnosis in the heterotaxy community. It also provides evidence that using technology to engage the patient community directly can allow for rapid data collection even in small, geographically dispersed patient communities. 

*Shapiro AJ, Tolleson-Rinehart S, Zariwala MA, Knowles MR, Leigh MW. The prevalence of clinical features associated with primary ciliary dyskinesia in aheterotaxy population: results of a web-based survey. Cardiol Young. 2014 Jun6:1-8.

Registry Announcement: Add YOUR Voice to Make a Difference!
PDF Imprimir Correo electrónico

There are no translations available.

The North American PCD Registry (NAPCDR) is now open for entries! Click here to add your voice to growing community of PCD patients, caregivers and experts working to make a difference for people with PCD.

To learn more about the importance of registries, click here


Página 1 de 3