Resource Library

RDCA-DAP, Research & Drug Development

Published December 1, 2021

How Will RDCA-DAP® Support Patient Focused Drug Development?

RDCA-DAP, Research & Drug Development, Understanding Rare Disease

What is Patient Focused Drug Development (PFDD)?

Diversity, Equity & Inclusion

Published March 1, 2022

Diversity, Equity and Inclusion – Part 2 (Membership Inclusivity: Who’s Left Out? Recognizing Barriers and Building an Inclusive Community)

Diversity, Equity & Inclusion

Published March 1, 2022

Kit de Herramientas de Divsrsidad, Equidad e Inclusion

Diversity, Equity & Inclusion

Published March 1, 2022

Diversity, Equity and Inclusion – Part 1 (Navigating DEI in Rare Disease Nonprofits)

Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

Webinar Recording: Create a Rare Disease Advisory Council in Your State

Recorded: January 13, 2021

Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

Webinar Recording: Advocating for a Rare Disease Advisory Council in your State

Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

Toolkit: Implementing a Rare Disease Advisory Council in Your State

*Requires form submission to access

Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

Toolkit: Creating an RDAC in Your State

*Requires form submission to access

Membership

The Nonprofit Roadmap: Strategic Planning for Beginners

Membership, Research & Drug Development

Research Ready Quick Reference Guide

Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

Recording: RDAC Stakeholders Meeting

Advocacy, Get Involved, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

RDAC Stakeholders Meeting 2021

Recorded: November 16, 2021

Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

RDAC Overview

Membership

RareLaunch Toolkit #2 (April 2021 Workshop)

This toolkit includes templates, guides and best practices for forming your foundation or engaging in research.