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Current  Initiatives  in  Rare  DiseasesDenis  Costello,  EURORDISCambridge  Rare  Disease  Summit  September  2015

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Vision

Rare Diseases International (RDI) will bring togethernational and regional rare disease patientorganisations from around the world as well asinternational rare disease-­specific federations, tocreate a global network of rare disease patients andfamilies

As a result of RDI, people living with a rare diseaseworldwide and their families will experience increasedpublic health services and support.

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Mission  Statement

To be a strong common voice onbehalf of people living with rarediseases around the world

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RDI:  General  Objectives

• To promote rare diseases as an international publichealth and research priority through public awarenessand policy-­making

• To represent members and people living with rarediseases at large, in international institutions and forums

• To enhance the capacities of members throughinformation, exchange, networking, mutual support andpotentially joint actions

• To be the voice of people living with rarediseases internationally

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Planned  ActionsAdvocacy• Development and adoption of a Joint Declaration “RareDiseases: an International Public Health Challenge”

• Potential drafting of position papers at the initiative of anymember organisation

• Introduce Rare Diseases International to UN’s ECOSOC,WHO, OECD

• Partnership and coordinated liaison with the InternationalAssociation of Patient Organisations (IAPO) forconferences, policy and WHO liaison

• Potential surveys to members

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A  successful example

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• Rare  Disease Day  – 8  editions and  still growing!

• 2008  – patients  organisations   from 18  countries

• 2015  – all  continents,   all  EU-­Countries,  hundreds of  events and  patient  groups

• Keys  to  success:  § A  grass  roots  campaign

§ It’s  patient  and  patient  organisation led

§ Great  opportunity  for  community  building§ Open  to  anyone for  non-­commercial   use

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Rare  Disease Day  2016

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2016  begins  a  new  cycle  of  4  years  (leap  year  to  leap  year)

• Overarching  theme:  Patient  Involvement

• Theme  for  2016:  Patient  Voice

• Slogan:  

Join  us  in  making  the  voice  of  rare  diseases  heard

Remember  to  share  your  activities  via:  www.rarediseaseday.org

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