Rare Disease Day 2017 Event

i3S, CGPP and Aliança Portuguesa de Associações das Doenças Raras invite you to join the Rare Disease Day 2017, which will take place at i3S - Instituto de Investigação e Inovação em Saúde, Porto.

With the motto “being rare” as an undertone, March 1^st is devoted to the presentation of unique and inspirational narratives that portray the dedication comprehended in rare disease research. Participants and associations looking to make a difference will also share larger than life stories about overcoming challenges and other positive examples.

We hope to see you there!

REGISTRATION FORM >>

PROGRAM

Part 1: Auditorium Corino de Andrade

15h00 Welcome session
Moderator: Jorge Sequeiros

Representatives of the Board of Directors of i3S and IBMC
Ponciano Oliveira, Member of ARS Norte's Board of Directors
Representative of ACSS Representative of DGS (to be confirmed)

15h20 Unique and Inspirational Narratives
Moderator: Joana Barros

The importance of research: screening of hereditary ataxias in Portugal as a model
Vítor Tedim Cruz - Neurology Service Director at Hospital Pedro Hispano, Matosinhos Local Health Unit

Full access to Tafamidis: the drive of the Portuguese Association of Paramyloidosis
Carlos Figueiras, President of the Portuguese Association of Paramyloidosis

Support to and ethics in rare diseases research
Marta Jacinto, President of Aliança Portuguesa de Associações das Doenças Raras

Part 2: Entrance Hall

16h40 Story-flavored coffee

1. Beyond limitations
Xavier Gonçalves - Portuguese Association of Paramyloidosis, Division of Barcelos
Diogo Lopes, Portuguese Association of Charcot-Marie-Tooth
João Sousa Silva, Neurofibromatosis type 2

2. Forging connections
Milena Paneque, Portuguese Association of Genetic Counselors
Beatriz Porto, Portuguese Association for Fanconi Anaemia research
Graça Porto, Portuguese Association of Haemochromatosis

3. Rare professional paths
Carla Oliveira, Ipatimup
Carolina Lemos, Unit for Genetic & Epidemiological Research on Neurological Disorders
Vítor Soares, Centro de Saúde de Barcelos

4. Rare Initiatives
Ana Duarte, Patient Innovation
Inês Leal de Faria, Aliança Portuguesa de Associações das Doenças Raras
Paula Silva, Medical School, University of Porto

18h00 Introducing the International Petition: "Help us raise awareness and support to research in rare diseases and save millions of people"

18h20 Closing remarks

FREE ENTRANCE | Registrations: http://bit.ly/2k7PM3y