Tuesday, April 30, 2019

CDH Charter

The member charities of ACDHO (the Alliance of Congenital Diaphragmatic Hernia Organizations are proud to announce the creation of a Charter.  

As was announced on the 2019 CDH Telethon, 5 members of ACDHO began creation of a charter over 2 years during the CDH Study Group Conference in Liverpool.   The Charter is finally complete and public and charities are signing on.

This Charter is meant to inspire the entire Congenital Diaphragmatic Hernia Community to work together for our common goals, to be respectful of the work of others and to collaborate professionally in the fight against CDH.

ACDHO includes any licensed and legal CDH charity that meets the professional guidelines as outlines.   New membership is voted on by all current members, is free and does not restrict charities in any way.   ACDHO was founded over a decade ago.

ACDHO Web Site - http://acdho.blogspot.com/

ACDHO CHARTER

Alliance of Congenital Diaphragmatic Hernia Organizations (ACDHO)
An international group of nonprofit and research organizations working together to better
serve patients and families affected by Congenital Diaphragmatic Hernia.
Code of Ethics
All members shall adhere to the following. Violations may result in consequences such as a
warning, suspension, expulsion from ACDHO, etc.

1. Members have a positive duty to observe the highest standards of truth, accuracy, and integrity
with fellow members and professionals, patients, families, the media,
colleagues, other organizations, and the public.

2. Members shall treat other individuals with dignity and respect, avoiding extravagant
claims or unfair comparisons and giving credit for ideas and words borrowed from
others.

3. Members must not engage in any practice nor be seen to conduct themselves in any
manner detrimental to the reputation of ACDHO or the reputation and interests of the
CDH Research and Medical Nonprofit Communities. Members also shall not
intentionally damage the professional reputation or practice of another member

4. Members shall avoid conflicts of interest.

a. Members shall not make medical referrals to any specific doctor(s) or facilities
over or above providing patient families with information on which hospitals
provide care for CDH.
b. Members have a duty to ensure that the actual interest of any organization with
which they may be professionally concerned is adequately declared.
5. Members will not disclose confidential information belonging to, or obtained through
their ACDHO affiliation to any person, including relatives, friends, and business and
professional associates, unless ACDHO has authorized disclosure. This policy is not
intended to prevent disclosure where disclosure is required by law. All members are
cautioned to demonstrate professionalism, good judgment, and care to avoid
unauthorized or inadvertent disclosures of confidential information. Upon separation of
a member from ACDHO, he or she shall return all documents and other materials that
may contain confidential information.

6. Members must uphold this code and cooperate with fellow members in so doing by
enforcing decisions on any matter arising from its application. A member that knowingly
causes or permits a colleague to act in a manner inconsistent with this code is complicit
to such action and shall themselves be deemed to be in breach of it.

7. Members are required to take all reasonable care that professional duties are
conducted in accordance with all requisite laws and without causing offence on the
grounds of gender, race, religion, disability or any other form of discrimination or
unacceptable reference.

8. Members shall avoid violating rules regarding intellectual property rights within
ACDHO.
a. The ACDHO seal is joint property of current members of ACDHO and can only be

b. The CDH Awareness Ribbon is public domain and may be used by any charity or
organization, or individual. Similarly, members agree that no entity will own
rights to the CDH Awareness Ribbon, CDH Awareness Day (April 19th), or any
other graphics, international events, etc. that should belong to all patients and
entities wishing to raise CDH Awareness.
c. All names, logos, websites, graphics, merchandise, etc. of individual charities
within ACDHO are their own intellectual properties and should not be used
without prior permission from said organization.
d. Members agree to respect the artistic rights of individuals and organizations, and
agree not to infringe or compete by creating similar intellectual properties.


Purpose and Goals
  • Work together to support and advocate for CDH patients and their families
  • Ensure that all CDH patients are referred to an ACDHO partnered charity for support
  • Raise CDH awareness worldwide
  • Help set standards for new CDH nonprofits and mentor new charities/leaders

All members must sign this charter, thereby agreeing to follow all rules stated therein. The
charter may be amended at any point in time, and members will be required to sign any
updated versions.

Saturday, March 30, 2019

ACDHO on Facebook


https://www.facebook.com/CDHorganizations/


For more to up-to-date news on the member organizations of ACDHO, please visit https://www.facebook.com/CDHorganizations/

(pictured above are the leaders of 4 CDH organizations)

Friday, June 30, 2017

2017 International CDH Conference



Join us for the 2017 International CDH Conference, hosted by CHERUBS.

Register to attend the largest annual CDH event and the first conference in the midwest in several years!

https://www.eventbrite.com/e/cherubs-2017-international-cdh-conference-tickets-34729628253

https://www.facebook.com/events/1195689943852269/

Meet other CDH families, learn the latest CDH research, share your stories, build new relationships and work together to help the cause.   This event is fun for the whole family, free and an excellent source of CDH support.

Wednesday, June 1, 2016

Tuesday, May 31, 2016

2016 International Congenital DIaphragmatic Hernia Conference





Holidy Inn Paris - Porte De Clicy
August 4 - 8, 2016
www.hiparisclichy.com

Rooms are 130 Euro for 2 people.   Reservations can be made by e-mailing lo@hiparisclichy.com

Because there is such a huge need for more information and support in Europe, we work with other ACDHO organizations to bring resources to more families there by holding our conference in Europe every other year (and American conferences in between).

Please register every member of  your family to attend.  Attendance is free.

Register at https://www.eventbrite.com/e/2016-international-congenital-diaphragmatic-hernia-conference-tickets-25801962364

Speakers this year:




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!