Quick Guide Series
A series of resources that address some of the most pressing challenges faced by those affected by rare disease.
We are excited to announce the launch of a new series of Quick Guides for the rare disease community. Over the course of the year, this initiative will address some of the most pressing challenges faced by those affected by rare disease to
- Empower individuals affected by rare or undiagnosed diseases with knowledge and actionable next steps to help navigate the complexities of a rare disease diagnosis, treatment options, and emotional wellbeing
- Equip patient advocacy organizations with critical capacity building resources to better serve their communities
Though there are more than 10,000 different rare diseases, many of the overarching needs of the community are the same. Based on feedback from our 800+ member Global Advocacy Alliance, frequently-asked questions to RARE Concierge, and community partners, we’re simplifying the search for actionable information to address these critical topics. These Guides include important insights, and best practices from the community – Global Genes, other leading organizations, subject matter experts and community members – in a variety of formats including videos, podcasts, toolkits, checklists, patient stories, and more.
Next Generation Drug Development Resources
A roadmap to guide your efforts as you partner with research. Advancing rare disease research is essential for creating meaningful change in the lives of patients and families, in our community. This collection of tools, guides, and expertise will help you navigate the research process. Explore areas of research, from discovery to clinical trials and regulatory engagement, and gain access to the resources that will support you in advancing rare disease research and treatments.
View Quick GuideMedical Gaslighting
This Quick Guide brings powerful stories from the rare community to light, equips you to recognize the signs of medical gaslighting, and offers actionable strategies to reclaim control of your healthcare. You’ll find practical tips to advocate for your needs, and empower yourself to be the strongest voice in your care journey ensuring your symptoms and experience are heard and valued.
View Quick GuideGuide to Interacting with FDA Through PFDD and Listening Sessions
This guide offers a roadmap for leaders of patient communities to successfully plan and execute Patient-Focused Drug Development (PFDD) or Listening Sessions with the FDA. Learn how to craft discussion guides, and prepare your patient or caregiver speakers. With actionable steps and strategic insights, this resource equips organizers to elevate patient voices and drive meaningful contributions.
View Quick GuideGuide to Fundraising
Successful fundraising is essential for every nonprofit, and one of the biggest challenges. This Quick Guide provides clear, practical steps to help you secure funding, including: Grant Writing Best Practices, Proven Fundraising Strategies, & Innovative Fundraising Ideas. Use this guide to refine and recharge your fundraising efforts, secure more grants, and build stronger donor relationships.
View Quick GuideGuide to Creating a Comprehensive Fundraising Strategic Document
This framework outlines the key components of a fundraising strategic document, helping you define goals, engage donors, and implement effective initiatives. It can serve as a template to ensure you develope a clear and focused strategic document for your fundraising, so your nonprofit can strengthen its mission and expand its reach in the rare disease community.
View Quick GuideGuide to Securing a State Proclamation for Rare Disease Awareness
Harnessing the wisdom of our 800+ member Global Advocacy Alliance, this Quick Guide topic emerged as common leadership pain point for rare disease PAG leaders. Fortunately a Barby Ingle, a member of our Leader Council, was ready to offer practical next steps for navigating and this process, alongside advice from other seasoned leaders and mentors in the Global Genes community.
View Quick GuideKnowing the Rights of Your RARE Child, (or Yourself) – A Checklist
Knowing your rights or those of your rare child (or yourself) is the first step toward effective advocacy. This guide outlines what to ask for and what you’re entitled to.
Experienced advocates including Kelley Coleman author of Everything No One Tells You About Parenting a Disabled Child, share insights on navigating complex insurance policies, educational requirements, healthcare access laws, and strategies for advocating effectively for loved ones.
The Importance of Getting a Genetic Diagnosis
Unlock the path to targeted advocacy and better medical care through the power of a precise diagnosis! This Quick Guide demystifies the genetic testing process, transforming confusion into clarity. Dive into actionable next steps and empowering insights designed to help you take control of your family’s health. With this guide, you’re equipped to navigate testing confidently, champion your needs effectively, and pave the way for informed decisions that prioritize your loved ones’ well-being.
View Quick GuideHow to Start a Rare Disease Patient Advocacy Organization
Starting a nonprofit can feel overwhelming. Which forms do you need? Who should be on your team? What should you prioritize first? What should you look for in your board members? This Quick Guide provides essential resources to support you at every step—practical tools, checklists, and mentorship opportunities—empowering you to take the lead in advocating for your rare disease community.
View Quick GuideStrategies for Improving Cooperation Across PAGs
Collaboration within specific disease communities and the broader rare disease ecosystem is critical for our collective success. However, when multiple patient advocacy groups (PAGs) exist within the same disease space, challenges can arise. Ideally, these organizations work together seamlessly, but what happens when they do not? This Quick Guide provides practical strategies to foster collaboration, improve communication, and resolve conflicts, enabling all parties to work towards shared goals.
View Quick GuideThank You to Our Quick Guide Sponsors
