The MISSION of The ADNP Kids Research Foundation (ADNP-KRF) is to advance the awareness and accelerate the treatment of ADNP Syndrome / Helsmoortel – Van Der Aa Syndrome (ADNP) by supporting research for treatments and drug development, promoting individualized specialty care and protocol, increasing awareness and scientific understanding, supporting families and providing information to help all individuals with ADNP realize their full potential and have a better quality of life.
We are a patient focused organization and have the largest collection of diagnosed patients worldwide, currently at 166.
ADNP Syndrome is also known as Helsmoortel-Van Der Aa Syndrome (HVDAS). It is a neurological genetic disorder highly linked to I/D, development and Autism. It is estimated to affect 1 in 27,000 children in the United States and Europe. To date, only 1.3% of the estimated worldwide prevalence have been diagnosed. Children have been diagnosed as early as 3 months of age, to 40 years of age. Males and females are affected 60/40.
VISION
ADNP-KRF is the first and only nonprofit organization in the world who exists to improve the lives of children born with this complex neurological genetic disorder. The vision of the ADNP-KRF is to make a positive change in the ADNP community, to engage, inspire and empower families, physicians, educators, researchers, and others to support and improve the lives of everyone affected by ADNP.
GOAL
Research is at the heart of our mission. It is our goal to find new and effective treatments as quickly as possible. To support and/or fund grants and projects that lead to additional research support from government agencies, pharmaceutical companies, other funding sources. To create protocol for current medical best-care practices. To gain a better understanding of the disease. Be the global and sustainable organization "knowledge center" for all things ADNP. Ensure that all actions taken by ADNP-KRF are grounded in the best available knowledge and ensure that those impacted by ADNP have the resources and opportunity to achieve their fullest potential.
WHAT IS ADNP SYNDROME?
Here we the syndrome, gene and phenotype symptoms.
ADNP SYNDROME,
ADNP GENE,
PHENOTYPE SYMPTOMS
We are a patient focused organization and have the largest collection of diagnosed patients worldwide, currently at 166.
ADNP Syndrome is also known as Helsmoortel-Van Der Aa Syndrome (HVDAS). It is a neurological genetic disorder highly linked to I/D, development and Autism. It is estimated to affect 1 in 27,000 children in the United States and Europe. To date, only 1.3% of the estimated worldwide prevalence have been diagnosed. Children have been diagnosed as early as 3 months of age, to 40 years of age. Males and females are affected 60/40.
VISION
ADNP-KRF is the first and only nonprofit organization in the world who exists to improve the lives of children born with this complex neurological genetic disorder. The vision of the ADNP-KRF is to make a positive change in the ADNP community, to engage, inspire and empower families, physicians, educators, researchers, and others to support and improve the lives of everyone affected by ADNP.
GOAL
Research is at the heart of our mission. It is our goal to find new and effective treatments as quickly as possible. To support and/or fund grants and projects that lead to additional research support from government agencies, pharmaceutical companies, other funding sources. To create protocol for current medical best-care practices. To gain a better understanding of the disease. Be the global and sustainable organization "knowledge center" for all things ADNP. Ensure that all actions taken by ADNP-KRF are grounded in the best available knowledge and ensure that those impacted by ADNP have the resources and opportunity to achieve their fullest potential.
WHAT IS ADNP SYNDROME?
Here we the syndrome, gene and phenotype symptoms.
ADNP SYNDROME,
ADNP GENE,
PHENOTYPE SYMPTOMS
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NAVIGATE Navigate collaboration between medical professionals, scientific researchers and families. |
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PROGRESS Progress toward improving the life of children living with this rare disease |
We are committed to finding those who can contribute and assist in researching new treatments, pharmaceuticals and gene therapy to help ADNP children reach their full potential and live a better life". Sandra Sermone, Founder & President, ADNP Kids Research Foundation
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