| 27 February 2017

Rare Diseases International hosts first policy event

http://www.retina-international.org/

 

Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. Retina International is happy to be a founding member of this important umbrella that brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create a global alliance of rare disease patients and families.

RDI’s mission is to be a strong voice on behalf of all people living with a rare disease and to advocate for rare diseases as an international public health priority while representing its members and helping to strengthen thier collective voice.

On Friday February 10th, RDI hosted a first-of-its-kind event in Geneva, bringing together patients and international experts in the fields of public health, human rights, scientific research and the health industry to discuss why and how rare diseases should be part of the global health agenda. President of Retina International, Ms. Christina Fasser opened the meeting and also contributed to a panel discussion on the importance of funding Rare Disease Research.

The policy event entitled ‘The Right to Health: The Rare Disease Perspective’ provided a platform for 170 participants to discuss ways in which complex issues of inequality and access to health for the estimated 300 million people living with a rare disease around the world could be addressed.

International collaboration can play a crucial role in promoting rare diseases as a global public health and research priority, in line with the spirit of the United Nations’ 2030 Sustainable Development Agenda of ‘leaving no one behind’.

Participants discussed how this international cooperation is vital to incentivise research and innovation, to increase access to diagnostics, medicines and treatments, and to ensure rare diseases are integrated into Sustainable Development Goal (SDG) number three to ‘ensure healthy lives and promote well-being for all at all ages’.

The importance of patient led research was highlighted by Ms. Christina Fasser who stated ‘rare disease research must be part of the education system in order for it to be funded and supported’. She spoke of the experience of Retina International and its members in establishing research for a significant unmet need in retinal diseases and remembered how the community worked together in the pre internet age. In those days organisations relied on expensive phone calls and biennial meetings to learn about progress and decide on strategy. Ms. Fasser also spoke of the complexities the community faces globally in gaining access to and reimbursement of genetic testing services. She stressed the importance of not forgetting in western society our fellow patients in less developed countries and hoped that the work of Rare Disease International and the NGO Committee for Rare Diseases at the UN will go some way to addressing this.

Read the report on the launch of the NGO Committee for Rare Diseases here http://download.eurordis.org.s3.amazonaws.com/ngocommittee/ngocommittee_report.pdf

 

 

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