Casa dos Marcos - Resource Centre for Rare Diseases. Portuguese Federation of Rare Diseases Associations

Casa dos Marcos - Resource Centre for Rare Diseases Portuguese Federation of Rare Diseases Associations Offer: Technical expertise in Rare Diseases (...
Author: Horace Owens
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Casa dos Marcos - Resource Centre for Rare Diseases

Portuguese Federation of Rare Diseases Associations Offer: Technical expertise in Rare Diseases (health and social services); Living Labs Look for: To be part of a consortium; ERN’s partnerships (overload and lysosomal diseases)

Portuguese National Association for Mental and Rare Disorders

• Patients’ Organization (NGO) • Centres accross the country

• Member: • Founder of Raríssimas Brasil • Affiliated Centre of a Reference

Centre for Lysossomal Diseases

1st Resource Centre for Rare Diseases in Portugal

• Residential Unit (24 patients) • Occupational Activity Centre (30 patients

• Autonomous Residential Unit (5 patients)

• Continuity Care Unit (39 beds)

• Clinical and Rehabilitation Units • TRACE-RD – Training Centre

We are interested in:

Health, demographic change and well-being SC1-PM-03-2017: Diagnostic characterisation of rare diseases SC1-PM-08-2017: New therapies for rare diseases European Reference Networks – CALL 2016


We offer:

Technical expertise and cooperation on Rare Diseases through: 15 specific disease Portuguese patients’ associations A Portuguese Reference Centre (Overload and Lysossomal diseases) A Resource Centre on Rare Diseases (health and social services) Living labs:

Maria João Freitas [email protected]


Dissemination and Exploitation of your project results We offer a skill/ and look for a consortium

Euronovia services for H2020 projects We support your research and innovation projects with a large range of services:  Grant application  Administrative management  Dissemination and exploitation of your results  H2020 training  Identification of opportunities

Dissemination and exploitation of your results Communication is strategic for the success of EU projects :  Creation of your dissemination materials  Organisation of your dissemination events  Support and advice with IPRs,  Definition of your exploitation activities

Euronovia Health partners

 And other SMEs for the H2020 SME instrument

Thank you for your attention ! Marie Prouteau [email protected] [email protected]

Biomedical Network -

Network with a number of dedicated researchers Offers a gateway to well organized clinical studies - Would like to establish contact with companies

- Researchers in our network are looking for partners

Biomedical Network University of Bergen- Haukeland University HospitalBTO AS - Jens Reigstad

BTO AS (Bergen Teknologioverføring AS) Owners:

Partners: •

Uni Research



 Siva


 Institute of Marine Research

Kunnskapsparken Sogn og Fjordane

Haraldsplass Diakonale Sykehus

 University of Bergen  Haukeland University Hospital

 Bergen college

/ 3

- Bergen Teknologioverføring AS - [email protected] - +4792296079


ERA-Net for Research Programmes on Rare Diseases

We are: -  Looking for partners -  Offering: funding + collaboraBve & informaBon plaEorm



•  European Research Area Network (ERA-Net) •  Created in 2006 (E-Rare-1) renewed in 2010 (E-Rare-2) at present funded under Horizon 2020 ERA-Net Co-fund ERare-3 (2014 - 2019) •  25 funding bodies from 17 European, Associated and nonEuropean countries (AT, BE, CA, CH, ES, FR, GR, HU, IT, IL, LV, NL, PO, PL, RO, TR) •  ObjecBve: coordinate and promote European and internaBonal efforts for funding research on rare diseases



•  Joint Transna4onal Calls for rare diseases •  Facilitate contact and use of European Research Infrastructures (BBMRI, EATRIS, ECRIN, EU-OPENSCREEN, ELIXIR, INFRAFRONTIER, INSTRUCT, RD-CONNECT) & European Medicines Agency •  “Looking for collabora4ons” plaBorm with 700 profiles from EU and beyond •  Scien4fic events (congresses & workshops)



E-Rare-3 Call for Proposals 2016 (JTC 2016) : Clinical research for new therapeu4c uses of already exis4ng molecules (repurposing) in rare diseases Timeline: •  deadline to submit projects à March 2016 •  More than 30 projects received •  1st evaluaBon à June 2016 NOW OPEN: opportunity to join addiBonal partners (with own funding) to projects that already applied and will be evaluated in June!!!



•  Partners that wish to develop funding acBviBes: §  research funding bodies (public, private, not for profit, e.g. paBents organizaBons) •  Partners that offer services to researchers •  JTC 2016 à if you are researcher/company interested to join projects submiged to E-Rare call – we can help

E-Rare CoordinaBon: Daria JULKOWSKA French NaBonal Research Agency [email protected] or [email protected] Tel. +33 178 09 80 78


Topics of interest:

1.1. Understanding health, well-being and disease SC1-PM-03-2017: Diagnostic characterisation of rare diseases 1.2 Treating and managing diseases SC1-PM-08-2017: New therapies for rare diseases

Looking for partnerships and competitive consortia for H2020 funding

WHAT - An Office created to support institutions in applying for Health Research and Innovation funding

FOR WHOM - To all institutions aiming to obtain funds for Health Innovation and Research. PUBLIC


MISSION - Support institutions to attract funding for Health R&I - Promote visibility and national competitiveness at European and international scales - Promote philanthropic, scientific, educational and cultural activities



Initial focus on the multiple funding opportunities under

Providing Personalised Support throughout the pipeline + Dissemination | Training | Networking

… With a Social Council to maximize the impact of our activity

Incl. 3 Rare Diseases Patient Associations

Fostering international collaborations by bridging local and international players for building competitive consortia Portuguese entities performing R&I on Rare Diseases (RD) with: * Involvement in EU Framework Programme and E-RARE projets ** Involvement in COST Actions on RD

* University of Aveiro * University of Coimbra (Faculty of Medicine) * CNBC/UC * Association for Innovation and Biomedical Research on Light (AIBILI)

* National Health Institute Dr. Ricardo Jorge * Instituto de Biologia Experimental e Tecnológica (iBET) * Sciences Faculty of University of Lisbon (FCUL) * Institute of Molecular Medicine (IMM)- FMUL * Instituto Gulbenkian de Ciência (IGC/FCG) * TechnoPhage,SA (TechnoPhage)

* Member of CH Social Council

* Centro Hospitalar do Porto - Centro de Genética Médica Doutor Jacinto Magalhães * Life and Health Sciences Research Institute (ICVS), School of Health Sciences, University of Minho * Institute for Molecular and Cell Biology (IBMC) | i3S ** IPATIMUP * Faculty of Medicine of the Oporto University Other institutions: - NOVA Medical School - CEDOC - Raríssimas | ANDO | AETN … - Rare Diseases Portuguese Federation Network (FEDRA) - Portuguese Alliance of Rare Diseases Associations - Portuguese Paediatric Society -Portuguese Society of Internal Medicine ** University of Algarve (N.E.D.R) -- …

Creating value in Health!

Contact us! Joana Camilo | Executive Director |  +351 918 722 434 |  [email protected] Graça Costa | Legal Officer |  +351 915 043 711|  [email protected]

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