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2019 Top-Rated Nonprofit

Chromosome Disorder Outreach, Inc.

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: CDO provides detailed information and emotional support to all those diagnosed with any rare chromosome disorder. CDO promotes research and a positive community understanding of these disorders. CDO envisions a time in the not too distant future when doctors will have a great deal of information available on each and every chromosome disorder. They will be able to tell parents symptoms associated with a particular deletion, duplication or other disorder as well as what not to worry about. It is also our hope that appropriate therapies or other treatments will be recommended specific to particular disorders and that affected individuals will have a much greater chance of a fuller life. This is already beginning to happen and it is CDO's goal to further support this research in any way possible. Individuals and families contacting CDO are reassured that they are alone and help is available to them.

Target demographics: all those diagnosed with any rare chromosome disorder

Direct beneficiaries per year: over 1000 individuals and families

Geographic areas served: the United States and worldwide

Programs: personalized networking programs - matches by chromosome disorder, medical and developmental symptoms and regional location available. Database registry maintained and updated daily. Library containing thousands of recent articles as well as original chromosome chapters. Periodic newsletter. Interactive website

Community Stories

101 Stories from Volunteers, Donors & Supporters

Jennifer Lee H.

General Member of the Public

Rating: 5

Helped me add my sons rare syndrome of Trisomy 15q21 and Marphans syndrome

Client Served

Rating: 5

Excellent nonprofit company with compassionate leadership. Highly recommend!

Previous Stories

Client Served

Rating: 5

Excellent nonprofit! Linda has been very helpful with anything I have ever questioned.

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Lisa386

General Member of the Public

Rating: 5

Great information source for Chromosone Disorders.

Previous Stories

Volunteer

Rating: 5

Great information source for the chromosome deletion community!

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Karla M.3

General Member of the Public

Rating: 5

CDO was amazing when me daughter received her rare diagnosis. Not only did they provide access to a geneticist to ask questions, but they also supplied us with contact details of other families with similar diagnoses. Reaching out to other families has been the only way we can find out more about our daughter's condition.
It is an absolutely crucial service that they provide.
We are in Australia and there is no charity or government service that does this. But location is not a boundary for CDO. So grateful.

General Member of the Public

Rating: 5

CDO is a wonderful resource for new parents who have a child with a chromosome or other disorder and for parents who have older children who are needing support. For us, it has been comforting to read about others experiences in raising their children, to know we are not alone. CDO is a great networking organization and an important vehicle to raise awareness about Chromosome disorders

Janet S.4

Client Served

Rating: 5

Exceedingly helpful information for individuals with quite rare genetic diseases and their parents. The ability to connect with other families from around the world to lend support and answer medical questions is invaluable.

kpaulson

Volunteer

Rating: 5

CDO was there for me when I needed it 12 years ago (told by the doctors not to google my son's deletion but I did anyway and it led me right to this wonderful source of information and support).

Previous Stories

Volunteer

Rating: 5

CDO was been a great resource to me when my son was first diagnosed and continues to be a great community that I try to support where I can!

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Board Member

Rating: 5

When my son, Max was diagnosed with a rare chromosome disorder at age 11, I had no idea what to do or where to turn. He was the only one in the entire USA and 10th in the world with his exact deletion. I was frozen in fear and uncertainty. I searched the internet for something, anything to help. I found CDO and was so excited. So many families dealing with different diagnoses, all rare. A year after my son's diagnosis, I received a call from a mom whose son was just diagnosed at age 3 with the same exact diagnosis as my son. CDO has a referral program. Without CDO, I would still be lost!! I wanted to help other families navigate through the special needs journey and started volunteering and then became a board member. This organization is incredible and I am happy to he apart of CDO!
Heidi Lerner

Previous Stories

Board Member

Rating: 5

When my son was diagnosed at age 11, we were told that he was the only known case in the US and 10th in the world. They didn't know much about the disorder and were studying the 6th Chromosome at Children's Hospital of Philadelphia, PA. We were so glad that we got a diagnosis, but we still scared of the unknown. He was hospitilized for a week after being diagnosed and we found out about several medical problems that we wouldn't have known. Things slowly got back to the way they were. I found CDO shrotly after he was diagnosed and was a parent contact for 6q and New Jersey. About a year later, I got a call from a mom who just got a 6q deletion diagnosis for her son and it was the exact same deletion as my son!! I was so happy to finally find someone that got it. I met several moms from NJ and have met them. I also found 3 other moms thru CDO who have boys with the same diagnosis as my son and have chatted with them. I was fortunate to get to meet 2 of them on a 6q mom's respite weekend. Without CDO, I would have no been connected to any of these families. Having children with rare chromosomal disorders is very diffivcult. Many times these kids never recieve a diagnosis and when they do, these disorders are misunderstood. Being a member of this organization gives you a sense of belonging. Offers great support, great resources and an extended family who are there for you. Thanks you CDO for all you do!

Kellie10

Client Served

Rating: 5

so helpful!! CDO really helped me feel less alone when my daughter was diagnosed. networking with other parents was invaluable to me at that time when I felt so lost

Previous Stories

Client Served

Rating: 5

CDO has helped me tremendously when I first learned of my child's diagnosis. Putting me in touch with other parents was invaluable to me.

Writer

Client Served

Rating: 5

CDO helped me so much when my son was little. Ive been part of the listserve and now Facebook page for many years. It was such a comfort to learn that I WAS NOT ALONE. Although my Geneticist didnt know there were others with a similar deletion, i found a whole group at CDO! My son is now 31. Thank you, CDO

Previous Stories

Client Served

Rating: 5

This nonprofit has helped me to meet other families who have children with chromosome disorders. I didn't know there were so many! We are not alone!

Amy M.11

Client Served

Rating: 5

Chromosome Disorder Outreach is the only place in the United Stares that helps you find your community, when your community is less than 10 other families affected by a disorder no one else has heard of. So grateful for this organization helping connect people who feel so isolated otherwise.

Ashley B.7

General Member of the Public

Rating: 5

Our 20 month old son was diagnosed at 16 months with 47, XYY after so many delays and traits that showed up as something was not right. He is still undergoing genetic testing while I searched for any online information on the chromosome disorder that was updated (many online studies about it are from 10+ years ago and are very negative). I registered him on the CDO website and immediately received an email from them. They are very helpful and offered 20+ articles on XYY. I hope to help in some way, other families with XYY boys who may not know much about the disorder or may not know what to expect.

1 Jennifer Dempsey S.

Client Served

Rating: 5

When our son was diagnosed with a rare chromosome disorder, finding any information was so difficult and daunting. I found CDO through a friend who’d told me about them and I’m so happy I did. I’ve learned so much more than I could possibly imagine, have made beautiful friendships by people we’ve connected through their Facebook group and will be forever thankful that there’s nonprofits like them that are able to help parents and families while they struggle to adapt to their changing lives with a chromo cutie.

General Member of the Public

Rating: 5

When we were finally given the diagnosis before my daughter's birth of a rare chromosome abnormality, we immediately started searching the internet for information. This was the first information we found. Just knowing we we're not alone was a big support for us. It's great being able to read about other parents challenges, updates, and support. Thank you.

1 Karen370

General Member of the Public

Rating: 5

They are such a wonderful connection to so many Rare families!

Jan Morris R.

Client Served

Rating: 5

After my grandson's birth, we were sent to a major children's hospital to the geneticist. He was diagnosed with a rare X-linked chromosome abnormality. They gave me what little information that they had on it. During the course of the next year, I came upon Chromosome Disorder Outreach. I ask for information and they immediately sent me all they had on it along with parents of children with the same disorder. More importantly, I have connected with parents of other disorders who share their ideas, friendship and support. They do not charge for this at all. This infomation and support has been invaluable. LATER, my daughter and granddaughter was diagnosed with the same disorder. CDO also notifies us of any new research and findings. Thank you, CDO!

Wiensy

Volunteer

Rating: 5

CDO provides great resources (Ask the doctor database, genetic/medical glossaries, news and chromosome specific information) and a way to connect those navigating chromosome disorders. I'm very happy I found this organization!

Client Served

Rating: 5

Hearing that your child has any disorder can be difficult, but when you hear that they don’t know what this means for your child can be scary. This agency s not only found information ha our doctors did not, but helped me find others with similar situations. Thankful we found them!

Frances McGinley I.

Client Served

Rating: 5

When my son was finally diagnosed back in the 90's this organization was pivotal in helping alleviate the fear of having a child with a rare Chromosome disorder. I am eternally grateful to the organizers and volunteers who do the work. This organization has helped an untold amount of families throughout the years.

Client Served

Rating: 5

Very helpful with my daughters chromosome disorder! The support from this online community is wonderful and let’s you know you’re not alone.