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PCDF CARE Day Rainbow Babies June 2015
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Please join us for  a CARE (Clinical Centers Awareness and Regional Education) Day sponsored by Rainbow Babies Hospital and the PCD Foundation.

 

Meet Dr. Benjamin Gaston and his colleagues from the Rainbow Babies PCD Clinical Center and learn more about goals of the PCD Clinical Centers Network and services offered for families affected by PCD at the Rainbow Babies center. A light dinner will be served.

 

For more information and registration click here!

 

 
PCD On The Move! Scientific Conference August 2015 Registration
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Event Details

Primary ciliary dyskinesia (PCD) is on the Move!

Please join us in beautiful Minneapolis, Minnesota for the second annual 'PCD on the Move' conference, 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 to register!

 

Objectives:

(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
testing)
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:

Currently in development. Last year's agenda is available at the link below for reference. We will be adding sessions on ENT and cardiology issues related to motile cilia disorders, as well as a basic science component in 2015.

A link to the 2014 meeting program for reference can be found here

Travel/Registration Stipends:

The PCD Foundation will have a limited number of travel/registration stipends available for attendees. Preference is support for young investigators. Please contact Michele Manion at This e-mail address is being protected from spambots. You need JavaScript enabled to view it for more information.

Abstracts and Posters:

.  The body of the abstract should not exceed 500 words, text only. Please submit to This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

SPONSORSHIP OPPORTUNITIES ARE AVAILABLE! PLEASE CONTACT LYNN EHRNE AT This e-mail address is being protected from spambots. You need JavaScript enabled to view it FOR MORE INFORMATION.

 
San Francisco Rare Disease Day Event 2015
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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" ?
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PCD on the Move- Move 4 a Cure! Fundraising Handbook
 
Heterotaxy and PCD
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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.

 
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