Wednesday, July 23, 2014

ACDHO 2014 CDH Conference in Dublin

 

The very first CDH Conference for families in Europe is underway in just 2 weeks!  Over 100 have registered already for this historic event!

Register at http://www.eventbrite.co.uk/e/acdho-2014-european-cdh-conference-tickets-6903985005


CONFERENCE SCHEDULE

Monday, August 11th
6:00 pm - Pizza Party, Introductions

Tuesday, August 12th
9:30 - 2:30 - CDH Awareness Day

Wednesday, August 13th
9:30 - 2:30 Medical Speakers
Free Genetic Testing

Thursday, August 14
CDH Support
Conference Close
CDH Celebration

Friday, August 15th
Check out

https://dl.dropboxusercontent.com/u/17116979/2014%20International%20Congenital%20Diaphragmatic%20Hernia%20Conference.pdf

Working Together

Members of ACDHO work together often in the fight against Congenital Diaphragmatic Hernia:

 Mass General and DHREAMS often work together to share lab samples for genetic research of CDH

 Joy Perkins and Dr. David Kays of Shands for Kids and Dawn of CHERUBS

 Clair Maher of UK CHERUBS with Dawn Williamson of CHERUBS



The very first CDH leaders; Dawn of CHERUBS and Onno Zwart of Stichting Hernia Diafragmatica.   Stichting Hernia Diafragmatica just celebrated their 20th year!

Wednesday, November 20, 2013

Stichting Hernia Diafragmatica

ACDHO is very happy to announce the addition of another member!

We proudly welcome
Stichting Hernia Diafragmatica, which is the world's first CDH charity and is based in The Netherlands!


http://www.chd.vuurwerk.nl/

https://www.facebook.com/pages/Stichting-Hernia-Diafragmatica/446008458744090


http://www.chd.vuurwerk.nl/


De Stichting Hernia Diafragmatica is opgericht in 1993

De doelstelling in het kort:

Steun geven aan hen die te maken hebben of krijgen met een KIND met een AANGEBOREN hernia diafragmatica.


Founded in 1993, by a group of parents. The primary goals were to arrange for parents to meet each other and to acquire knowledge about the disorder.

Friday, November 1, 2013

CDH-New Zealand

ACDHO is very happy to announce the addition of another member!

We proudly welcome CDH-New Zealand, which is now supporting CDH families in New Zealand!

https://www.facebook.com/CDHNewZealand






This page has been created for parents and family members to share stories, gain info and keep in touch with anyone else that are or has been affected by CDH (Congenital Diaphragmatic Hernia) in New Zealand.

HDC Hérnia Diafragmática Congenita Brasil

ACDHO is very happy to announce the addition of another member!

We proudly welcome HDC Hérnia Diafragmática Congenita Brasil, which is now supporting CDH families in Brazil!

https://www.facebook.com/pages/HDC-H%C3%A9rnia-Diafragm%C3%A1tica-Congenita-Brasil/153255954830276


About

APOIE ESTA CAUSA!
Description
O diafragma é um musculo que separa o tórax (coração e pulmões) do abdôme (estômago, fígado, intestino e outras vísceras). Além de separar as duas cavidades o diafragma é também o músculo mais importante envolvido nos movimentos respiratórios. Uma hérnia diafragmática é uma malformação do músculo (um pequeno defeito ou "buraco"), permitindo que o conteúdo da cavidade abdominal passe para o tórax.

No início da gestação, quando o bebê ainda está se formando, existe um "buraco" no diafragma. Isto é normal, mas este "buraco" normalmente se fecha no terceiro mês de gestação. Isto acontece em cerca de 1 em cada 2.500 gestações. O fato dos órgãos abdominais terem subido até o tórax impede o desenvolvimento adequado dos pulmões, causando uma condição conhecida como hipoplasia pulmonar. Isto significa que os pulmões são menores do que eles deveriam ser.

Thursday, September 5, 2013

Olivia Faith Foundation, Inc




Meet Alliance of Congenital Diaphragmatic Hernia Organizations - ACDHO member, the Olivia Faith Foundation, Inc

A non-profit 501(c)3 Organization 
  • Raising global awareness for CDH
  • Providing support to families affected by CDH and other conditions
  • Awarding scholarships to students seeking a career in fetal therapy 
  • Aiding other organizations in research, prevention and treatments.


 Olivia Faith was diagnosed with CDH at her 20 week ultrasound  While still in the womb she survived a surgery that would give her poorly developing lungs a chance to grow. She was born on October 28, 2011 and had surgery to repair her diaphragm at 1 week old.  After 7 weeks in the NICU, with Mommy and Daddy by her side, she passed into eternal life on December 18th 2011. 


Learn more at http://www.oliviafaithfoundation.org/

Visit their Facebook page at http://www.facebook.com/pages/Olivia-Faith-Foundation-Inc/48601600474466

Olivia Faith Foundation, Inc PO Box 690053 Vero Beach, FL 32969 

DHREAMS Research Study (Congenital Diaphragmatic Hernia)




Meet Alliance of Congenital Diaphragmatic Hernia Organizations - ACDHO member, the DHREAMS Research Study (Congenital Diaphragmatic Hernia).

DHREAMS study was created to improve the understanding of the molecular genetic basis of CDH

Mission:

DHREAMS (Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science) study was created to improve the understanding of the molecular genetic basis of CDH. This National Institute of Health (NIH)-funded research team is composed of health care providers and researchers across the country, coordinated at Columbia University Medical Center. Multiple medical centers are enrolling individuals and families with CDH. The knowledge gained through this research will lead to improved diagnosis, treatment, and quality of life for individuals and families with CDH.

Overview:

The DHREAMS study is an NIH funded multicenter national research study of congenital diaphragmatic hernia (CDH). The goal of our study is to improve the understanding of the causes of CDH.

General Information:

Each year more than 1,000 babies in the United States are born with a Congential Diaphragmatic Hernia (CDH). For the majority of these babies, the cause of the CDH is unknown.

Learn more at http://www.cdhgenetics.com/