Our vision: ISNS is recognized worldwide for its contributions to the detection of neonatal conditions and the prevention of their adverse outcomes through excellence in neonatal screening.
Our mission: To enhance the quality of testing and medical services through dissemination of information, guidelines and best practices that benefit all family members and their babies by helping to ensure protection of babies from life-quality threatening conditions.
Welcome to the website of the International Society for Neonatal Screening (ISNS).
This society is aiming to advance screening for neonatal and infant sicknesses and disorders, worldwide.
ISNS has around 350 members in more than 70 different countries. Most members have a professional (para)medical background but a few are involved in parents' or patients' organisations.
For more information about ISNS visit the ISNS-Info section (see above).
ISNS welcomes new members who have demonstrated an active interest in neonatal screening.
Why should I join as a member?
As a member you are entitled to see the privileged pages containing specific news items, a monthly neonatal screening literature service and a discount to ISNS-related conferences. Under certain conditions you may apply for travel grants to such conferences. Having access to the on line membership directory you have easier access to other members sharing specific interests.
How do I become a member?
Please read the Membership-info section (see above) and subsequently click on the button "Member subscribe"
ISNS publishes its own journal, please see http://www.mdpi.com/journal/neonatalscreening
Worldwide members per November 1, 2015
375 members in 73 countries.
Countries with at least one member are shown in blue-grey, others in green.
In 2015 former ISNS President Dr Ken Pass, after having suffered some years from ALS, passed away. He was most known for his many years of service in the New York State newborn screening laboratory in Albany, NY, USA. Few people knew that Ken also did much work in helping NBS programmes in developing countries to get started and expanded.
Recently ISNS was approached by Mr Thomas Mookken, CEO of NeoGen Labs, Bangalore, India, with a proposal to create a travel fund in Ken’s honour, to stimulate colleagues in countries neighbouring India to travel to and participate in NBS conferences and/or related projects. After some discussion the name "Ken Pass Memorial Travel Fund" was selected. Ken’s widow Karen was pleasantly surprised and with great enthusiasm gave her permission to use Ken’s name for this purpose.
NeoGen Labs provided EUR 5000 to ISNS as custodian, to be spent in five annual portions of EUR 1000 to provide applications for travel support. Preference is given to applicants from the following countries: Bangladesh, Bhutan, Nepal, Maldives, Pakistan, and Sri Lanka. Applicants do not need to be ISNS member. The application procedure is identical to the usual one for ISNS travel support. Please go to http://www.isns-neoscreening.o
ISNS wants to express its thanks to NeoGen Labs for this generous donation.
Muscular Dystrophy Coordinating Committee (MDCC) coordinates muscular dystrophy activities across the National Institutes of Health (NIH), with other Federal agencies and muscular dystrophy patient organizations. Recently, the MDCC 2015 Action Plan for the Muscular Dystrophies has been published, which outlines priority areas for improving treatments and reducing the personal and societal impacts of all types of muscular dystrophy. It is intended to be a blueprint for the entire muscular dystrophy community. All stakeholders, including academic researchers, companies, government agencies, patient advocacy groups, and patients and their families, have a shared responsibility for meeting the needs described herein, and thereby improving the lives of people living with muscular dystrophy.
The priority areas covered by the MDCC 2015 Action Plan include understanding causes, screening and diagnosis, developing treatments, preparing for clinical Trials, providing care, management and access to services.
Read the Action Plan here
(source: Orphanews May 5 2016)
The European Medicines Agency (EMA) has also recommended a Strimvelis for the treatment of patients with adenosinedeaminase deficient severe combined immunodeficiency (ADA-SCID), who have no matching donor for a stem cell transplant for marketing authorisation.
ADA-SCID is an ultrarare immune disorder, caused by a faulty gene inherited from both parents that stops the production of adenosine deaminase. Children born with ADA-SCID are severely impaired with virtually no immunity to fight off infections as well as several non-immunological health problems. The disease is usually fatal in the first two years of life, unless the function of the immune system can be restored.
Typically, ADA-SCID sufferers who receive stem cell transplants from genetically matched siblings have a good chance of survival and recovery of the immune system. However, survival of patients who have no related matched donor is poor, mainly because of the risk of graft versus host disease. Strimvelis is manufactured from a patient’s own immature bone marrow cells (called CD34+ cells) into which a normal adenosine deaminase enzyme gene has been inserted.
For further information
(Source: Orphanews 19-04-2016)