NZORD executive director becomes President-elect of ICORD

NZORD - the New Zealand Organisation for Rare Disorders

This announcement is made to coincide with Rare Disease Day on Wednesday 29 February 2012.

NZORD executive director John Forman has become President-elect of ICORD www.icord.se an International Society focussed on improving the lives or rare disease patients and their families. John was elected to this position at the 7th ICORD meeting in Tokyo this month.

His appointment follows other significant past Presidents for this organisation: Steve Groft, Director of the US Office of Rare Diseases; Jan-Inge Henter, now head of research at the Karolinska Institute in Sweden; and Domenica Taruscio, head of the Italian Research Institute for Rare Disorders.

John’s two year term will result in automatic elevation to the Presidency of ICORD in 2014 when the term ends for current President Dr Virginia Alejandra LLera of the GEISER Foundation in Argentina.

“It is a great honour to follow the work of these leaders in forming an international collaboration of patient, family, government officials, industry, academia, health care professionals and regulators”, says John. “ICORD is an important discussion point for policy, research, patient needs, ethics and health care for rare disorders, and good initiatives are emerging from its work.”

One recent achievement was the completion and launch at the Tokyo meeting of policy guidance for international agencies and national governments about the need and the policy rationale for rare disease action plans in all countries, whatever their level of wealth or development. This declaration is expected to be published soon in a European health journal.

For more on Rare Disease Day see www.rarediseaseday.org.nz

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