Resource Library Search Results

Membership

Building Your Board Guide

Membership

Building Your Case: Fundraising for Your Organization

Membership

Bylaws General Nonprofit Structure Template

Membership

Creating Your Medical Advisory Board

Membership

Published March 21, 2018

Fundraising

Membership

Published November 6, 2019

Fundraising: Activate Your Board

Membership

Published October 26, 2020

Get Inspired to Take the Leap to Form a 501(c)(3) or Establish a Disease Registry to Advance Your Community

Membership

Guidelines for Medically-Vetted Information

Membership

Published August 16, 2019

Increase Donations with Financial Transparency

Membership

Medical Advisory Board Member Agreement Template

Membership

Medical Advisory Board Policies and Procedures Template

Membership

Medical Advisory Board Tip Sheet

Research & Drug Development

Natural History Studies and Patient Registries

Membership

Operating Budget Template

Membership

Policy on Actual and Potential Conflicts of Interest Template

Membership

Privacy Policy Template

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

RDAC Overview

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)

Recording: RDAC Stakeholders Meeting

Membership, Research & Drug Development

Research Ready Quick Reference Guide

Membership

The Nonprofit Roadmap: Strategic Planning for Beginners

Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

Toolkit: Creating an RDAC in Your State

*Requires form submission to access

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

What is Patient Focused Drug Development (PFDD)?

Understanding Rare Disease

Published March 1, 2015

Huntington’s Disease: Emerging Concepts in Diagnosis and Treatment

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

Webinar Recording: Your State Just Enacted an RDAC – Now What?