COOL SITES THAT HELPED US OUT
CHROMOSOME DISORDER OUTREACH
Education, Advocacy, Information & Support
For all those affected by a rare chromosome disorder. Lots of great information for the newly diagnosed family. One of the most comprehensive sites out there.
http://www.chromodisorder.org/CDO/Default.aspx
CDO also has some cool You Tube videos about kids with chromosome disorders.
Check this one out.
http://www.youtube.com/watch?v=14jsoiEvIhg
CHROMOSOME 3 DISORDER REGISTRY AND SUPPORT GROUP
A newer site whose mission is "to provide information and emotional support to families, friends and professionals who would like to learn more about children/family members affected by a Chromosome 3 disorder." What a great way to connect with kids just like me!
http://www.chromosome3disorder.com/
UNIQUE
Rare chromosome disorder support group based in the UK. Really a great group of people and very instrumental in helping families connect with those with similar deletions. If your child has recently been diagnosed with a rare chromosome disorder, make UNIQUE one of your first stops.
http://www.rarechromo.org/html/home.asp
AUSTRALIAN RARE CHROMO AWARENESS NETWORK (ARCAN)
Wow! What a great site! Links to other Blogs and a great "What Does It Mean?" page!
http://www.arcan.org.au/
LUCILE PACKARD CHILDREN'S HOSPITAL AT STANFORD
Wyatt's home away from home! All his special doctor friends hang out at Stanford.
http://www.lpch.org/
NATIONAL INSTITUTE OF HEALTH PUBLIC ACCESS
Article specific to Chromosome 3p14.p13 Deletion
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2853231/
GENETICS HOME REFERENCE
Here is the link to their information on Chromosome 3. Wow! Lots of good stuff here!
http://ghr.nlm.nih.gov/chromosome/3
GLOBAL GENES PROJECT
Look! There are lots of people out there with rare genetic diseases and lots of people out there who love and support them and want to share information and research.
"The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations."
http://globalgenes.org/
FRIENDSHIP SITES - MY BUDDIES!!
Our Facebook Page!
http://www.facebook.com/#!/pages/Chromosome-3-and-Me/310325512350859
Erin Reilly's Tricycle Tales Blog! A warm and very funny friend who has three boys and lots of adventures.
Her son, Scooter, has a chromosome disorder, too. It feels good to hear other stories of kids like me!
http://www.tricycletales.com/
Yahoo Chromosome 3 Support Group has the NICEST people with the most amazing kids. And boy do they have stories to share! Mom can ask questions and POOF, all sorts of love and support pops up! Awesome!
http://health.groups.yahoo.com/group/Chromosome3/
Lilly Lane - Kids Without Diagnosis
Here is the link to Lilly's website and check out her Facebook group, too! "A place to find support and information for families/parents of children with undiagnosed disability". What a sweet girl and tough little girl! Great job getting helpful information out to others!
http://lillybellbaby.blogspot.com/
https://www.facebook.com/lillylanekidswithoutdiagnosis
Special Kids Crusade
Another source of friendship and information for kids and families going through the same issues as we are. Links to legal help, medical diagnosis, support groups, etc. "Founded by parents of developmentally disabled children, Special Kids Crusade understands the challenges and achievements of children with differing abilities."
http://www.specialkidscrusade.org/index.html
Education, Advocacy, Information & Support
For all those affected by a rare chromosome disorder. Lots of great information for the newly diagnosed family. One of the most comprehensive sites out there.
http://www.chromodisorder.org/CDO/Default.aspx
CDO also has some cool You Tube videos about kids with chromosome disorders.
Check this one out.
http://www.youtube.com/watch?v=14jsoiEvIhg
CHROMOSOME 3 DISORDER REGISTRY AND SUPPORT GROUP
A newer site whose mission is "to provide information and emotional support to families, friends and professionals who would like to learn more about children/family members affected by a Chromosome 3 disorder." What a great way to connect with kids just like me!
http://www.chromosome3disorder.com/
UNIQUE
Rare chromosome disorder support group based in the UK. Really a great group of people and very instrumental in helping families connect with those with similar deletions. If your child has recently been diagnosed with a rare chromosome disorder, make UNIQUE one of your first stops.
http://www.rarechromo.org/html/home.asp
AUSTRALIAN RARE CHROMO AWARENESS NETWORK (ARCAN)
Wow! What a great site! Links to other Blogs and a great "What Does It Mean?" page!
http://www.arcan.org.au/
LUCILE PACKARD CHILDREN'S HOSPITAL AT STANFORD
Wyatt's home away from home! All his special doctor friends hang out at Stanford.
http://www.lpch.org/
NATIONAL INSTITUTE OF HEALTH PUBLIC ACCESS
Article specific to Chromosome 3p14.p13 Deletion
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2853231/
GENETICS HOME REFERENCE
Here is the link to their information on Chromosome 3. Wow! Lots of good stuff here!
http://ghr.nlm.nih.gov/chromosome/3
GLOBAL GENES PROJECT
Look! There are lots of people out there with rare genetic diseases and lots of people out there who love and support them and want to share information and research.
"The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations."
http://globalgenes.org/
FRIENDSHIP SITES - MY BUDDIES!!
Our Facebook Page!
http://www.facebook.com/#!/pages/Chromosome-3-and-Me/310325512350859
Erin Reilly's Tricycle Tales Blog! A warm and very funny friend who has three boys and lots of adventures.
Her son, Scooter, has a chromosome disorder, too. It feels good to hear other stories of kids like me!
http://www.tricycletales.com/
Yahoo Chromosome 3 Support Group has the NICEST people with the most amazing kids. And boy do they have stories to share! Mom can ask questions and POOF, all sorts of love and support pops up! Awesome!
http://health.groups.yahoo.com/group/Chromosome3/
Lilly Lane - Kids Without Diagnosis
Here is the link to Lilly's website and check out her Facebook group, too! "A place to find support and information for families/parents of children with undiagnosed disability". What a sweet girl and tough little girl! Great job getting helpful information out to others!
http://lillybellbaby.blogspot.com/
https://www.facebook.com/lillylanekidswithoutdiagnosis
Special Kids Crusade
Another source of friendship and information for kids and families going through the same issues as we are. Links to legal help, medical diagnosis, support groups, etc. "Founded by parents of developmentally disabled children, Special Kids Crusade understands the challenges and achievements of children with differing abilities."
http://www.specialkidscrusade.org/index.html
