Topic: A Landscape Map of the Key Global Rare Disease Organisations

Dear Colleague,

We are Joint Guest Editors of a special edition of the Rare Disease and Orphan Drugs Journal. We are seeking to develop an issue titled “A Landscape Map of the Key Global Rare Disease Organisations”. This thematic issue will provide an overview of the unique characteristics of each organisation, but also their similarities. We would like to invite you to provide a paper that covers the activities and perspectives of your organisation, and in particular, how it contributes to the rare disease community. In addition, we would like you to focus on what are the opportunities for strengthened collaborations and working together across different organisations and regions. We will construct an overarching editorial based on the submissions we receive.

Yours Sincerely
Dr. Daniel O'Connor and Dr. Anneliene H. Jonker

Articles:

● Maria Cavaller-Bellaubi. EURORDIS-Rare Diseases Europe;

● Daria Julkowska. European Joint Programme on Rare Diseases;

● Philip J. Brooks. Division of Rare Diseases Research Innovation;

● Ritu Jain. Asia Pacific Alliance of Rare Disease Organisations;

● Claudia Gonzaga-Jauregui. Enfermedades Raras en el Caribe y America Latina;
● Samantha Parker, David A Pearce. International Rare Disease Research Consortium.

31 Jul 2023