DysNet Community

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SandraRC
moderator

Congenital limb differences world map

Hello everyone!

Maybe you already know that in the Members section there is a new world map. It is a more visual and fast way to contact other community members.
https://www.rareconnect.org/en/community/d...

3 important things:

1) To appear on the map you only have to edit your profile and add the location. If you already have done it, you can also specify your city, even zip code.
https://www.rareconnect.org/en/profile/edit

2) Unless you have the profile marked as public, the information on the map is only visible for members that have registered to the community. This means that visitors may see the map but not the spots and the links.

3) If you wish, you can also make your spot in the map only visible for your friends within the community. This option can be changed always from your profile.

If you have any doubt, leave me a comment below!

SandraRC
moderator

For the recently diagnosed

If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?

Looking for family members of children with congenital leg differences who cannot walk.

I am a healthcare professional in New Mexico, US. One of my patients is pregnant and has recently received a prenatal diagnosis of phocomelia based on ultrasound findings. The fetal thigh and calf bones in each leg are extremely shortened and one foot is clubbed. The baby is also missing one arm. I am looking for parents or family members of a child who also has limb differences that impair or negate ability to walk. My patient would like to speak with such an individual to learn more about what life is like caring for a child with this type of physical disability. Please respond if you are available or have interest in speaking with her, regardless of location! Thanks!

geoffadamsspink
moderator

Hi, I'm Geoff Adams-Spink, chairman of EDRIC/DysNet. Thanks for your post. We have 34 member organisations in 20 countries. I have posted your message on a number of our member organisations' Facebook groups and pages, asking for someone to help you. I hope somebody does, but if they do not, please feel free to come back to me. My email address is geoff.adams-spink@edric.eu and you will get a quicker response if you email me direct. Our community is all about peer support. I've asked parents and those directly affected by limb difference to contact you. We have number of organisations of those affected by Thalidomide syndrome, many whom will be able to offer advice.

I hope this is helpful.

Kind regards,
Geoff Adams-Spink

Poland syndrome

i'm Vilma. i'm from ALBANIA. i just move here in AMERICA. i was born with POLAND SYNDROME. i didnt know what i had till the moment that i went to ITALY to meet a doctor.non of doctors in my country knew what i had.i used to have two plastic surgery but it wasnt good enough.for the doctors it was the first case.so i still have signs all over my chest.this problem had affected my life .i would like to know if i have any change in this age to have opportunities to be normal.any kind of surgery that can fix my problem?

agenisie

bsr ,je suis papa de chéraz une jolie fille née le 14/09/2015 avec une agenisie de la main gauche, je cherche à savoir est ce qu'elle peut etre operée ou greffée

annarogers
moderator

Bonjour, Je vous recommande de prendre contact avec ASSEDEA
http://www.assedea.org/cgi-bin/index.php

TAR Syndrome - Argentina

We've got a 4 months old boy with TAR syndrome. We would like to be in contact with someone from Argentina or other places to share information about it, and so we can do things better for our child's benefit.

Notice: This text content has been translated automatically by a third-party service.

muchas gracias johana... mi hijo esta barbaro.. hace de todo... es muy bueno saber de buenas experiencias... saludos

Me alefgro que este muy bien me encataria conocerlos es un nene muy fuerte les deseo lo mejor

muchas gracias.. te agende en el celu.. te puedo enviar watsahp??

DysNet

I strongly support Polish victims of the drug

I was born in 1960, and only now dared to write about my handicap. I have underdeveloped arms.
I did not know that so many people are affected by Thalidomide.
I wish a nice life to those who were affected by this drug.
Greetings