COMMITTEES

POLICY Committee

The Policy Committee* is responsible for developing and recommending advocacy priorities and policies as well as preparing RDI position papers, statements and declarations.

The Policy Committee is managed by RDI Public Affairs Manager, Dolores Cviticanin.

Yann Le Cam

EURORDIS 

Elvira Martinez

FEDER – Federacion Espanola de Enfermedades Raras

Eleni Antoniou

TIF – Thalassaemia International

Lara Bloom

Ehlers-Danlos Society

Roberta de Pina

FADEPOF – Federación Argentina de Enfermedades Poco Frecuentes

Migdalia Denis
Pulmonary Hypertension Latin Society
Kelly du Plessis

Rare Diseases South Africa

Luciana Escati

FADEPOF – Federación Argentina de Enfermedades Poco Frecuentes

Ritu Jain
Asia Pacific Alliance of Rare Disease Organisations
Salome Mekhuzla

World Federation Hemophilia 

Christine Mutena

 RDK – Rare Disorders Kenya

Ramaiah Muthyala

 IORD – Indian Organization for Rare Diseases

Jesus Navarro

ALIBER – Iberoamerican Alliance for Rare Diseases

Sylvia Roozen

IFSBH – International Federation Spina Bifida and Hydrocephalus

Lisa Safarty

NORD – National Organization for Rare Disorders – USA

Leire Solis

IPOPI – International Patient Organisation for Primary Immunodeficiencies

Kawaldip Sehmi

IAPO – International Alliance of Patients’ Organizations

Christine White

CORD – Canadian Organization for Rare Disorderss

The purpose, objectives, and time frame of Committees are detailed in the Terms of Reference of each Group.

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* Previously known as the Advocacy Committee