Kit de herramientas Share4Rare para la defensa del paciente


Recursos para la defensa del paciente

Colección de recursos para diversos campos de la defensa del paciente (en inglés):

Recursos regulatorios

EU Rare Disease Policy

EU National Policy

EMA - European Medicines Agency

EMA - Conflicts of interest guidelines

EMA - Getting involved

EMA - Involvement of patients - Video

EMA - Involvement of patients - Presentation

EMA - Declarations of interests practical guide - Presentation

EMA - Guidance for submission and validation of electronic declaration of interests and electronic curriculum vitae

EMA - e-DoI and e-CV submission

EMA - Handling competing interests

EMA - Public Declaration of Interests and Confidentiality Form V2. (Sample)

Orphan drug designations and authorisations

Health technology assessment

Access to orphan drugs


Redes Europeas de Referencia para Enfermedades Raras

FDA draft guidance for RD: Common Issues in Drug Development for Industry

WDO - Priority Medicines Rare Diseases


Recursos de defensa

European Commission and Rare Diseases


EURORDIS Position Papers

Eventos de EURORDIS

Finding your tribe Rare Connect

Rare Disease Day in Europe

Policy fact sheets for patient advocates

Advocacy grant timeline sample

European Patients Forum (EPF)

EPF Position Papers

EPF The added value of patient organizations

Additional Non-Profit Resources

Free Project Management Templates

Eurordis Rare Disease Info: Guidelines & Manual

Advocacy Tool Kit Skills and Strategies for Effective Self and Peer Advocacy

Methods used by advocacy groups

The best tools for advocacy campaigns

Advocacy action kit for Campaigns


Recursos de educación

EUPATI Glossary on medical terms

EMA Glossary on regulatory terms

EMA Training Resources

EURORDIS Open Academy

European Patients Academy (EUPATI)

EPF Library

Orphanet Emergency guidelines

The Orphanet Database: Clinical Practice Guidelines for Rare Diseases

The IRDRC: Policies and Guidelines to maximize impact


Recursos de recaudación de fondos

EURORDIS fundraising toolkit

NORD’s  A to Z Fundraising Guide

FSDH Rare Disease Day Fundraising Toolkit

Cancer Research Example on how to do your own fundraising

Ideas para fundraising 


Kits de herramientas para la defensa

EURORDIS - Advocacy tool kit to integrate RD into social services and policies

EURORDIS Toolkit to create information services for rare diseases

EUROPLAN – EURORDIS Tool Kit for National Conferences

Global Genes - Becoming an Empowered Patient : A toolkit for the Undiagnosed

NCATS - Toolkit for Patient-Focused Therapy Development

NIH - Toolkit for patient-focused therapy development

RCE - Advocacy Toolkit

Arvo : International advocacy toolkit for researchers

Global Genes - Toolkit for patient advocate

Global Genes - Advocacy Toolkit for Support Groups

Global Genes - Raise Awareness for Your Rare Disease toolkit.

WHO - World Health Organization Advocacy Manual

WHO - Guide for Effective Programmes: Module 6: Policy and Advocacy

UICC - Advocacy Toolkit

CCCA - Advocacy Toolkit:  A Guide to Grassroots Advocacy

Última modificación
Mié, 10/02/2021 - 13:50