Newly Diagnosed?
Kleefstra Clinic at the Rosamund Stone Zander Translational Neuroscience Center
Resources
IDefine Social Media:
Please make sure to follow IDefine on Facebook / Instagram / Twitter / LinkedIn and sign up for our newsletter to stay on top of all our news, announcements and community interest stories.
Kleefstra Syndrome Facebook Pages
We are a global community! There are support groups set up as private, closed groups on Facebook for various regions around the world.
- Kleefstra Syndrome Public Facebook Page
- Kleefstra Syndrome; 9q Deletions Private Facebook Page
- Kleefstra Syndrome - Chromosome Mutation Private Facebook Page
- Kleefstra Syndrome All Grown Up Private Facebook Page
- Australia Kleefstra Syndrome Private Facebook Group
- Belgium Kleefstra Syndrome Private Facebook Group
- Brazil Kleefstra Syndrome Private Facebook Group
- France Kleefstra Syndrome Private Facebook Group
- New Zealand Kleefstra Syndrome Private Facebook Group
- UK Kleefstra Syndrome Private Facebook Group
Global Genes
Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases.
National Organization for Rare Diseases (NORD)
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD’s Resource Center provides patients and caregivers with free webinars, fact sheets, infographics and other helpful materials to guide you on your journey with a rare disease.
Have a resource to suggest?
Please email us at unlock@idefine.org
Thank you!
As IDefine continues working towards our mission, we are seeking partners and volunteers who can help us raise funds and organize our efforts to build this much needed resource for the Kleefstra Syndrome community. If you would like to donate time, talent and resources to further our mission, we would love to hear from you.
Please reach out at Unlock@IDefine.org
Please reach out at Unlock@IDefine.org
Our Current Needs:
– IT Coordinator
– Development Director
– Data Management Coordinator
– Communications Team Member
– Fundraising Team Member
Fundraise
We would love to hear from you.
If you have any questions feel free to contact us. We will be sure to get back to you as soon as possible.