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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.

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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).

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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

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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.

Kimberly G.3

General Member of the Public

Rating: 5

I reached out to this organization as my daughter was recently diagnosed with a deletion and duplication of the chromosome 20. Darlene was extremely helpful and fast at getting me information regarding my daughter's diagnosis. After contacting the geneticist working with the organization they were able to find a few cases in which were similar along with one that was very close to that of my daughter's. It helped a lot as my daughter's geneticist could not provide me this much information to look at. It made me feel less alone and have more resolve regarding her diagnosis. I appreciate them offering invaluable information to parents such as myself simply looking for answers.

Client Served

Rating: 5

I have just had the results of my 15 year old daughter's genetic testing come back last Monday. It was frustrating since she had genetic testing done as a toddler and it didn't come back with anything concrete until now. It is duplication of 8q12.1 - 8q21.12.
Pending our appointment with the pediatrician, he rang to give us some details about the results so I can study it before the appointment. I was expecting the research to take months, but once i stumbled into CDO, it was surprisingly quick. Within a day, I got a reply, some information and offer of help from a doctor to answer any question. All from a very caring lady.
Thank you so much for the help. I feel like my daughter and our family finally belong somewhere.

Board Member

Rating: 5

We recently discovered that our 15 year-old son has a deletion of his 10th chromosome. After searching the internet and coming up with nothing more than some medical case studies that were impossible to read, I stumbled upon the CDO. I filled out a form and in 24 hours, i was given knowledge and support from a wonderful group of parents whose children are going through similar issues.

spneedsmom

Board Member

Rating: 5

Great organization that has helped me feel less alone!!

Previous Stories

Board Member

Rating: 5

14 years ago my son was born with an unbalanced translocation. Know one was able to tell me anything about life expectancy, quality of life, etc. The Drs. were stumped as well. Thankfully I came across CDO and they showed me that I wasn't alone. My child may not have the same chromosome disorder as the next member but we all work together to help people out. Awesome organization!!

Client Served

Rating: 5

Chromosome Disorder Outreach helped me to understand Regarding mutant genes that was found at my fetus (UPD3), direct me to a technique, whole exome sequencing (WES), which allows recognition of mutations in almost all protein-coding genes.
and provide with all relevant medical information about UPD3.
.

Christina124

Client Served

Rating: 5

This nonprofit has offered invaluable resources to a parent whose child was diagnosed with a very rare chromosome disorder. When even the doctors don't have information, Chromosome Disorder Outreach, Inc. did.

General Member of the Public

Rating: 5

Great support for my Grandson and his family. Information available. Super organization

Donor

Rating: 5

I am connected to the CDO through my nephew. This organization has helped my sister so much!

General Member of the Public

Rating: 5

I am the mother of a wonderful daughter who is the mother of a wonderful son who has a chromosome disorder. Chromosome Disorder Outreach has been an amazing support for my daughter and grandson - both emotional, practical and inspiring, as well as providing research and extensive information for their family.

Client Served

Rating: 5

CDO's slogan is "You Are Not Alone." When your child (or children in our case) are diagnosed with a rare chromosome disorder, it does feel like you're alone. Through CDO's network and database, we've been able to learn more about the disorder and connect with other families. CDO is a bright light, in a dark, scary situation. Keep up the good work!

Volunteer

Rating: 5

CDO has been a tremendous help to my family. We found CDO 17 years ago when our son was born. We were so confused and alone but CDO had and still does show that we are not alone.

Client Served

Rating: 5

CDO is an amazing group of people dedicated to helping complete strangers walk through the difficult and sometimes devastating world of genetic syndromes. This is a group of caring, knowledgeable, compassionate, and hard working volunteers. You can connect with someone on the other side of the keyboard day or night. You can e-mail them for journal articles related to your child's chromosome disorder, or with any type of question you may have and someone will get back to you within 24 hours, sometimes sooner. I have personally had questions answered by the geneticist on staff. He helped me unravel a difficult diagnosis for my daughter, and gave me the information that I necessary for me to speak with her hematologist and make a compelling case for further studies. If you or a loved one has a chromosome disorder, whether rare or not, CDO is a great place for information and a caring person to walk you through the tangled web of doctors, treatments, therapies, and information.

Client Served

Rating: 5

Thankful for this organization and the people I have connected with.

General Member of the Public

Rating: 4

My son, Darius is 26 years old with a Chromosome deletions 13q. I have been a member of Chromosome Disorder Outreach, Inc. since he was 3 years old.
The newsletter is a great source of information and connecting you with other families of children with rare chromosomal disorders. I have found geneticists who are familiar with my son specific deletion.

Client Served

Rating: 5

This group has given us the access to connect with other families that have children with similar chromosomal disorders. That connection has been invaluable to us.

Previous Stories

Client Served

Rating: 5

Such a great organization. They were able to pair us with another family with a child with similar diagnosis. That connection has been invaluable.

Volunteer

Rating: 5

My daughter has an extremely rare genetic disorder and through this nonprofit we managed to connect with about 10 children with the same rare chromosome disorder. We have been able to compare developmental progress, medical findings, solutions that have worked, and also compassion, support, useful tips and friendships. It's an amazing site that has changed our lives, broadened our knowledge, and brought parents together in ways no other organization has been able to.

Client Served

Rating: 5

Amazing, very informative, a must for anyone who has a loved one with a chromosome disorder! Thank you for all you do!!!

Lynda27

Client Served

Rating: 4

My son and 2 grandchildren were diagnosed with a rare chromosome deletion 2 years ago. This sent our world into chaos, trying to find any information to understand what this was about and what to expect. It was only at my insistence that my 6yo grandson was diagnosed, through a pediatrician, as he was showing definite signs of autism. We eventually got results of genetic testing in the mail and had to wait 8months for a genetic counselling.
It felt like the longest 8 months of my life, as I searched and searched for information.
Am so grateful to the chromosome disorder outreach for the information and support they provide to families in similar situations. I cried with relief when I came across the website, just to know there was others out there going through the same torment of feeling in the dark with very little support. Thank you for just being there! L.Robinson

General Member of the Public

Rating: 5

My daughter has mosaic Trisomy 18 and CDO provide great information and advice

Client Served

Rating: 5

Its hard for parents and or individuals that need resources to help a loved one, but with the help of CDO I had many usefull informative sites at my hand.

Client Served

Rating: 5

We found out a month ago that our baby has a rare genetic condition...one that doesn't even have a name! As soon as I found out, I started looking online for some sort of information and came across CDO. Even before I fully registered (which I've now done and gotten access to many other benefits), I read and cried through so many different pages on their site. The cover photo on their website says, "You are not alone," and that was exactly what I needed to hear. I am very thankful for how this organization has helped me just in the past few weeks and I anticipate it being a wonderful resource for us throughout our daughter's life.

Jared R.

General Member of the Public

Rating: 5

CDO has been a place for me and my wife to learn more about our son's condition. We have also found out that we are not alone as we have learned the stories of other families. This website and nonprofit has been a great support community for us.

Professional with expertise in this field

Rating: 5

Great website that help medical geneticists provide information on rare chromosomal disorders to patients.

Client Served

Rating: 5

Three years ago I got a phone call from the geneticist's office. I was told that our daughter Diana has a rare chromosome deletion that is associated with major abnormalities of the body, as well as overall developmental delays. Like many mothers who are confronted with such news, I fell to the floor screaming. I felt so alone. Nobody I knew was in a situation like ours. Additionally, Diana's deletion was not presenting itself in the same way as others who have her deletion, so we had no blueprint for her development.
When I found this group I also found people like me, going through similar experiences. From discussing practical and medical issues (which diapers are best for larger children) to emotional issues (how do we react when people mock our children) we have a place to go. Additionally, with more research and awareness, we hope to improve the lives of our children. We want all the good things for our children that all parents want.
Picture -Diana and her Daddy when he returned from deployment

Client Served

Rating: 4

They are the only US organization that cares about our children's condition. They are a source of info for those of us who must advocate for our children in a medical environment geared to treating "standard" issues with normal children.

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Client Served

Rating: 5

When you learn that your child has a chromosome disorder that is shared by only 20 or so other children in the world and this condition is considered "undiagnosed" because the doctors do not know anything about it, you are bewildered. CDO was a godsend because it connected us with parents of similarly affected children. It was in talking with these parents that we were able to manage our child's healthcare. The doctors simply have no experience in dealing with children with "undiagnosed" chromosome disorders. I do not know what we would have done without CDO.

1 Cheryl161

Client Served

Rating: 5

This is an excellent organization for information and connection to other families with rare chromosomal disorders. They were the first real information I found when my son was about 3-years-old and I was lost back then. This organization helped me greatly. He's now 21.
Cheryl Callahan

1 Delores J.

Board Member

Rating: 5

Hi,
My son, Darius is 24 years, born with chromosome abnormality deletion 13q. Darius is a fun and personable young man. He is vocal but his expressive language is compromised and limited. His receptive language is better. He is a handsome young man with beautiful blue eyes. Darius is graduating from a program called Career and Community Studies at the College of New Jersey, an academic and living independently program for young adults with developmental disabilities. If someone had told me ten years ago, your son will attend college and do well. I would have look at them as if they had two heads. My son has surpass my limited thinking. He has shown me that is very capable of living a productive life with support. Darius is graduating from college this May, and is working three days a week for three hours a day. He loves sports, and his goal is to work for an university sports team. I have been a member of the Chromosome Disorder Outreach since my son was 3 or 4 years old. It's a organization for us to share our story and experience raising our kids with a rare disorder. It has apprised me of resources and medical professionals to help better understand my son's disorder.

Client Served

Rating: 5

Chromosome Disorder Outreach has been a huge support and source of information for me since my son was born 12 years ago with Chromosome 8p Disorder. I am very grateful for this wonderful and much needed organization.

Previous Stories
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Client Served

Rating: 5

Hello. Twelve years ago, my second son was born with a rare chromosome disorder and CDO helped get me through this very tough and confusing time. I still find solace and helpful information with the group even now. They are an invaluable non-profit that supports and aids families facing these rare illnesses. I highly recommend support for this wonderful, life-changing non-profit group to continue it's great work.

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Client Served

Rating: 5

An amazing resource for families with kids w/ chromosome disorders. The best of the best

Client Served

Rating: 5

CDO has been so supportive and generous with their assistance and time during very difficult times.

Previous Stories

Client Served

Rating: 5

CDO helped me through a very difficult pregnancy in which doctors diagnosed the fetus I was carrying with a rare chromosome anomaly. I was frightened and confused until I received very helpful knowledge and guidance from CDO. My son is alive and thriving today, thanks in large part to CDO walking me through the challenging steps of becoming a parent. Heidi

1

Donor

Rating: 5

An excellent organization that provides information and support to families and care givers of children with a variety of chromosome issues.

Client Served

Rating: 5

Parents of a child with a rare chromosome disorder, and the kids themselves: You're not alone. And there's lots of information and knowledge that didn't used to exist, and that's continuing to mushroom. That's CDO's message and mission. CDO uses the power of the Web to connect people who would otherwise be isolated and in the dark. As a parent, it's enormously helpful to know our daughter's condition may be rare, but she's not alone, and that medical and parental knowledge and help out there. It's like stumbling around in a dark room, and finally, you've got light.

1

Client Served

Rating: 5

Chromosome Disorder Outreach is invaluable for families of children with Chromosome abnormalities. My son has a rare chromosome deletion (less than 20 in the world) and it was hard to find information or families that had similar issues to us. Chromosome Disorder Outreach passed on the names of 4 families that had a similar deletion. I was able to connect with them and discuss similarities and differences in our children. It is a lonely place when your child is unique, but Chromosome Disorder Outreach has made it seem a lot less lonely!

annewear

Client Served

Rating: 5

When my son was diagnosed with a rare disorder in 2009 I felt so much less alone when I connected with the Chromosome Disorder Outreach. I found some other families whose children had the same affliction and we were able to form a Facebook support group. Thanks CDO for all the great work you do!

Susan307

Volunteer

Rating: 5

When my grandson was born, we felt very alone. CDO has helped us know that others care, that others have been able to deal with what at first feels like unbearable news, and has given us the support to find our way. Such a gift!

Previous Stories

Volunteer

Rating: 5

When you're expecting your first grandchild, you never think about having problems. You only await with eagerness that first time you get to hold your son's child, to kiss those cheeks. When my daughter-in-law birthed my first grandson, he landed us with surprise after surprise that we definitely weren't ready for. From his cleft palate and lip, to his need to be whisked away to the ICU, to his months and months in the hospital, all the things that we thought NEVER would happen to our family happened.

We felt alone, confused, sad, terrified, and more... how could this be happening to us? CDO was there for us. There was information beyond what the doctors even knew. There were other parents who were a step or two ahead of us with advice and experience. There were explanations of some of the basic terms doctors were throwing around. There was a community of people who understood what we were going through.

No one could change the reality, nor would we now wish it to be other than it was, as this little boy is the joy of our lives. But we went from frightening aloneness to being held in a community of those who understood. I don't know what we would have done pre-internet, or pre-CDO.

Adam55

Client Served

Rating: 5

CDO helped us find other families with children that had the same disorder as ours. When there are only 19 children in the world that have been diagnosed with the same disorder, that is a blessing. Keep up the good work.

2 Julie223

Client Served

Rating: 5

We were at a total loss of direction when my grandson was recently diagnosed with 2 rather rare conditions. I found information, direction, and comfort in the advice and medical research information I received from them. Knowing I was not alone in this has made all of the difference in the world to my sanity!

Client Served

Rating: 5

My 2 week old son was diagnosed with a chromosome disorder a week ago. I didn't know where to go or what to do. I am so thankful I found CDO. They responded quickly and offered us invaluable connections to other families going through the same thing. This life preserver saved me from an otherwise very overwhelming and isolating experience.

General Member of the Public

Rating: 5

My three kids and I were diagnosed with a rare chromosome disorder and chromosome disorder outreach helped us get through a difficult time.

Jessica238

Client Served

Rating: 5

CDO helped me find others like my daughter! Love!!

Client Served

Rating: 5

My son and I were not diagnosed with a micro duplication on 16p13.11 until he was 32. Until that time he had faced many physical, emotional and mental challenges but we never knew why. This site made us feel we were no longer alone. I am learning a great deal about how to assist my son and hope that some of our experiences will also help others. I am so grateful to now have support we both need.

Client Served

Rating: 5

When your child is diagnosed with a chromosomal abnormality, you feel completely confused and scared. This website allows you to connect with others who are experiencing what you are as well as find valuable information. It feels so great to know you are not alone.

Krysta R.

Client Served

Rating: 5

My daughter is 1 of 22 in the world with her diagnosis, Tetrasomy 8p Mosaicism. I had no idea where to turn or who to talk to for support. Then I heard about The Chromosome Disorder Outreach and my expectations went up! The CDO gave me valuable resources to contact and those relationships I have now I owe entirely to the CDO's caring dedication to helping families living with rare disorders. I am always looking for ways to give back, but I know I will never be able to repay what the CDO has given my daughter and my family!

Client Served

Rating: 5

Our daughter is diagnosed with a condition in which their are no other known cases exactly like hers in the world. We felt alone for so long, until we discovered the CDO. While we still don't know cases exactly like our daughter's, we feel connected and we don't feel alone because we have this valuable organization. They have been so amazing. Just last week I had a genetics question that I didn't feel comfortable asking our primary doctor until I had more information. I emailed with CDO and had a detailed response from one of the geneticist in less than 24 hours. Talk about AMAZING. Completely eased my fears and gave me confidence going forward with speaking to my daughter' team.


We are so grateful for the CDO's efforts and would highly recommend them to any family we meet with a chromosome disorder. I wish we would have known about them 3 years ago when our daughter was first diagnosed! So thankful to know them now.