EURORDIS invitation to create young people network

A EURORDIS and NORD Member Organization 

As a EURORDIS organization member, MEBO has received the message below from EURORDIS - Rare Diseases Europe, an invitation to create a network of young people living with a rare disease, to participate in EURORDIS or European Medicines Agency activities. If anyone wishes to volunteer to represent MEBO and express interest, please let me know. This might entail some organizational work on your part as directed by EURORDIS.

Dear EURORDIS member,

EURORDIS has established working relations with the European Medicines agency (EMA) since its very beginning in 1997.
The EMA has a long history of involving adult patients in its work and has systems in place for their participation across many activities; however this has not as yet included the involvement of young people and children.
There are ongoing discussions within the Paediatric Committee (PDCO) on the value and feasibility of involving these stakeholders and it has been proposed to establish a young persons network with the Patients and Consumers working Party (PCWP).

As the EURORDIS representative in the PCWP, I am calling for your help in identifying young people living with a rare disease who would be willing to become member of a network of young people within the umbrella of the PCWP.
This includes:
Identify existing youth groups across the European Union (diseases specific to people of less than 18 years of age)
or young people part of an existing organisation who would volunteer to be part of this network (yourself, your son, your daughter, niece, nephew...)
When young people are identified, we would like to propose them a training
on EMA work regarding (paediatric) medicines development and authorisation process, and opportunities for their involvement. The areas and methodologies for the involvement of young people within EMA/PDCO activities would include:
Define the most appropriate methods and tools for involvement of young people (e.g. written consultation, use of social media etc...)
Define the scope, frequency and type of situations which could benefit involvement of young people
If yourself are interested and less than 18 y.o., or if you know someone who could be interested, please fill-in this online questionaire: https://www.surveymonkey.com/r/Z2H9G39

Many thanks in advance!

Sincerely,

François Houÿez
Treatment Information and Access Director / Health Policy Advisor
www.eurordis.org
+331 56 53 52 10

EURORDIS Paris' Office- Plateforme Maladies Rares, 96 rue Didot, 75014 Paris - France

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br (MEBO Brasil)
diretoria@mebo.com.br
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A EURORDIS and NORD Member Organization