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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: Our mission is to provide information and support services to families worldwide affected by Dyskeratosis Congenita & Telomere Biology Disorders, to encourage the medical community's research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.

Target demographics: patients and families with a dyskeratosis congenita & telomere biology disorder diagnosis

Direct beneficiaries per year: about 200 families from approximately 9 different countries

Geographic areas served: worldwide

Programs: on line support, monthly family chats with medical advisors, educational materials for doctors and patients, newsletters, long weekend sessions at Camp Sunshine in Maine where children attend "camp" and adults attend lectures by the world's leading authorities on DC. Our Facebook Page is: https://www.facebook.com/#!/pages/Dyskeratosis-Congenita-Outreach-Inc/306708396035693?ref_type=bookmark and Pinterest page is: https://www.pinterest.com/dcoutreachinc/

Community Stories

44 Stories from Volunteers, Donors & Supporters

1 Jeni C.

Client Served

Rating: 5

After my daughter was diagnosed with DC this was the first place we were directed to. The information we have received through the website, on monthly family chats and by attending family retreat at Camp Sunshine has been invaluable. We would be lost without them.

2 Katie162

Board Member

Rating: 5

DCO has been absolutely essential in saving my own child's life. The board members and medical team that make up this group are instrumental in making sure information and connections are made to better the patient and families lives. I cannot say enough good about DCO. They make the world a better place. After our first camp I was so inspired I had to be a part of it too.

4 gailbhb

Donor

Rating: 5

When I read the Facebook posts of moms and dads seeking answers and advice, or when I read the amazing stories of children and young adults affected by DC, who meet such tremendous challenges every day, I am grateful for the dedication of the people involved in Dyskeratosis Congenita Outreach Inc. They are vigilant, always ready to connect parents to resources, to disseminate needed information as soon as it is available, to fundraise, to encourage and affirm, to go out of their way to reassure young people and their families that they are never alone.

Previous Stories
10

Client Served

Rating: 5

How do you explain a bone marrow failure cancer-causing genetic disorder in what started out to be a casual conversation about a loved one? Where can you connect with the parents and family and friends of other "one in one million" loved ones who are seeking answers to the same questions? This website connects those affected by DC with those who seek to effect change. It has been an invaluable resource for my family.

3

General Member of the Public

Rating: 5

DCO has done a tremendous amount of work to connect the individuals impacted by this rare disease and they have worked tirelessly to help educate the medical field.

6

Volunteer

Rating: 5

The individuals and doctors who are a part of this nonprofit give tremendous amount of time and are deeply connected to the families and patients who suffer from Dyskeratosis Congenita. Those who run DCO ask for nothing and provide so much support and strong medical advice that is priceless to us who are affected.

6

Donor

Rating: 5

Dyskeratosis Congentia Outreach has dedicated staff searching for a cure for this rare disease. This disease seems to have different effects depending upon the individual and the circumstance's.
I personally Know several that are a part of the outreach progam, Robin and Diane, please reach out to them with either a donation or your help in some other way. Diane and Robin pour there time and energy assisting with charitable events and alerting people like us and around the world about this rare disease and how to recognize it .
If it wasn't for them many may have been lost due to this rare disease.
Please reach out to the Dykeratosis Congentia Outreach with a donation to assist them with there efforts to tame this rare disease that cripples and cause death to young children and young adults in our neighbor hoods and around the world.
Thanks so much for your donation
Randy L Huiras
New Ulm
Minnesota.




.

5

General Member of the Public

Rating: 5

Dyskeratosis Congenita is a disease that not everyone is very educated on.

Until my brother in law and his 3 children were diagnosed with it, I myself did not know very much about this disease. Very often a person talks to someone who have been sick but the doctors are not able to find out what is wrong with them. It could very well be Dyskeratosis Congenita that they have but don't know it.

5

Board Member

Rating: 5

The volunteers at DCO have helped bridge so many connections in the world of rare, inherited bone marrow disorders. The doctors and resources it makes available to its members shed light on a very dark and daunting topic.

Previous Stories
13

Volunteer

Rating: 5

The outreach and support group helps connect families affected by rare, telomere biology disorders. The volunteers who run the group provide family support meetings, sponsor family retreats, and support physicians involved in research. DC Outreach, Inc.'s Facebook page allows families the opportunity to ask questions questions and find answers not readily available in conventional media.

Core tenants of the group are education and advocacy and it recently published the disease's seminal treatment resource to aid families and physicians in managing this complex condition.

Read more
5

General Member of the Public

Rating: 5

DC Outreach has been instrumental in our lives from the day of diagnosis. Team members have taken time to reach out to me personally and connect me to not only other families but, specialists in the field. They've taught me about studies, camps, and conferences which have influenced us greatly. They are always quick to help and treat us like family. We feel incredibly blessed to know them and have their support on our journey.

8

Volunteer

Rating: 5

A wonderful organization that is working hard to provide education and support on a disease that isn't well known by doctors. Their work is making a real impact on getting the word out and helping those who are diagnosed.