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"
Worldwide members per May 1, 2014
350 members in 68 countries.
Countries with at least one member are shown in blue-grey, others in green.
An energetic and passionate group of 34 sickle cell advocates including seven hematologists, other medical & allied health professionals, patients and their families from across eight provinces attended the Canadian Advocacy on the Hill 2015 event on May 5, and held strategy-planning meetings with the members of parliament and senators. The goal of this year's event is to raise more awareness of the disease among law-makers and push forward three important and critical askings. Sickle Cell Disease Association of Canada (SCDAC) is seeking for a pan-Canadian national strategy embracing:
1. Universal Newborn screening
2. Establishment of comprehensive care centres
3. Patient Registry
To crown the meetings of the advocacy day, SCDAC, in collaboration with the Sickle Cell Disease Parent Support Group of Ottawa (SCPSGO) held an awareness reception at the beautiful Commonwealth room on the Parliament Hill.
At the reception, SCDAC honoured Mr. John Adams with the first ever National Patient Care Award of Excellence for his contributions to the Newborn Screening Program for sickle cell disease across Canada. John Adams is member of ISNS, one of the few members who at a close distance has experienced the beneficial effects of neonatal screening when his son, some twenty years ago, was timely identified as PKU-“patient” and subsequently treated.
On April 8, 2015, the Dutch Health Council published new recommendations to the Minister of Health regarding further expansion of the Dutch NBS programme from 17 to 31 conditions.
Already within one week the Minister adopted these recommendations. The Dutch programme will be the first in Europe to formally include SCID and X-ALD. Other notable aspects are: 1. MPS1 will be included in contrast to Pompe and Krabbe; 2. DMD is not included; 3. HCY should be removed from the current panel since screening of more than 1 million Dutch newborns measuring methionine concentrations did not identify a single case; 4. General reporting of carrier status to the parents is not recommended.
The full report in Dutch including an executive summary in English is available at http://gezondheidsraad.nl/sites/default/files/201508neonatale_screening.pdf
A full translation in English is expected to be published mid 2015.
The European commission has also released a fact sheet of EU action on rare diseases on the event of rare disease day. In recognition of the significant impact of such diseases on sufferers, their families and carers, the European Commission describe the integrated approach taken to improve access and equity towards prevention, diagnosis and treatment of these patients throughout the European Union. The factsheet illustrate EC actions in several areas important to rare disease patients such as:
• Supporting actions for an early diagnosis
• Supporting European research for better understanding and treatment of rare diseases
• Incentivising pharmaceutical companies
• Establishing a European platform on rare diseases registration
• Helping the organisations that support patients
• Assistance and support for member states’ efforts
• Gathering the best expert advice
• Supporting projects
(source: OrphaNews 170315)