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1 employee from Global Genes Project has joined PatientsLikeMe.
Global Genes Project
Profile Activity
3505 Views
205 Followers
Member since
Jun 20, 2012
Last updated
May 19, 2013
About Global Genes Project


The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world.

Sign Up for the RARE Open Registry Project™ Today!

Global Genes Project and PatientsLikeMe® have joined forces to create the RARE Open Registry Project™ (RARE ORP™) to provide a resource for patients and families fighting rare and genetic diseases.

Every time a person or family enters data into the RARE ORP™ system, they receive information back showing their data compared to other patients fighting similar diseases or taking similar therapies. 

The more you share, the easier it will be to find rare patients like you or your loved ones.

Register today -- it's fast and easy!

 

 

Want to connect to patients like you and get the latest news from Global Genes Project? Join Now!

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Public Followers of Global Genes Project

Gender
66% Females
34% Males
<2020- 2930- 3940- 4950- 5960- 6970+
Current Age
51%12%18%12%5%2%0%
Follower Follower Since
zuckerberbvu
Data Quality: 2 stars
  • Sex: Male
  • Age: 22y
Condition: Parry Romberg Syndrome 1 additional condition(s)
Quality of Life:
  • Mental: Moderate
  • Physical: None
I am: Neutral
Portrait_default_thumb zuckerberbvu about 5 months ago
murphy7
Data Quality: 1 star
  • Sex:
  • Age: 60y
Condition: Churg Strauss Syndrome 4 additional condition(s)
Quality of Life:
  • Mental: Moderate
  • Physical: Mild
I am: Bad
Portrait_default_thumb murphy7 about 6 months ago
PatientAdv
Data Quality: 0 stars
  • Sex: Female
  • Age: 16y
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb PatientAdv about 10 months ago
ThreeQ
Data Quality: 0 stars
  • Sex: Female
  • Age: 7y
Condition: Global Developmental Disorder 1 additional condition(s)
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb ThreeQ about 1 year ago
CCHSmom
Data Quality: 0 stars
  • Sex:
  • Age: 41y
Condition: Congenital Central Hypoventilation Syndrome
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb CCHSmom about 1 year ago
HempelTwin1
Data Quality: 1 star
  • Sex: Female
  • Age: 9y
Condition: Niemann-Pick
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
40029-thumb HempelTwin1 about 1 year ago
Gauchermom
Data Quality: 0 stars
  • Sex: Male
  • Age: 16y
Condition: Gaucher's Disease 7 additional condition(s)
Quality of Life:
  • Mental: Mild
  • Physical: Mild
I am: Good
47282-thumb Gauchermom about 1 year ago
Doodle~Bugs world
Data Quality: 1 star
  • Sex: Female
  • Age: 10y
Condition: Heart Murmur 4 additional condition(s)
Quality of Life:
  • Mental: Mild
  • Physical: Mild
Portrait_default_thumb Doodle~Bugs world about 1 year ago
TheGirlWhoWaited
Data Quality: 0 stars
  • Sex:
  • Age:
Condition:
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
Portrait_default_thumb TheGirlWhoWaited about 1 year ago
Sophiegreen
Data Quality: 1 star
  • Sex: Female
  • Age: 20y
Condition: Blount's disease 2 additional condition(s)
Quality of Life:
  • Mental: Mild
  • Physical: Mild
Portrait_default_thumb Sophiegreen about 1 year ago