Empowering You with Knowledge and Tools
RareGen’s Resources Page is designed to inform, equip, and inspire visitors with reliable information and practical tools. Whether you’re navigating a rare disease diagnosis, looking to advocate for change, or seeking ways to support our mission, you’ll find valuable resources here.
Educational Materials: Learn and Take Action
Rare Disease Facts
Comprehensive Overviews:
“What Are Rare Diseases?” – Definitions, key statistics, and the global impact of rare diseases.
“Rare Diseases by the Numbers” – Infographics highlighting facts like:
“The Challenges of Rare Disease Diagnosis and Care” – Insights into diagnostic delays, treatment gaps, and patient struggles.
Spotlight Series:
- Over 300 million people worldwide live with a rare disease.
- More than 7,000 rare diseases have been identified, yet only 5% have treatments.
Spotlight Series:
- Dedicated sections for specific rare diseases, such as PFIC 4, rare cancers, and genetic disorders, with easy-to-understand descriptions, symptoms, and management tips.
Advocacy Toolkits
For Individuals:
- “How to Advocate for Rare Diseases” – A step-by-step guide to raising awareness in your community.
- Templates for writing to legislators or creating petitions.
- Social media graphics and hashtags to amplify your message.
- Resources for starting local awareness campaigns or organizing events like Rare Disease Day activities.
- “Hosting an Advocacy Workshop” – Tips for educating schools, workplaces, and communities.
Downloadable Guides
Printable PDFs and ebooks:
- “Navigating a Rare Disease Diagnosis: A Guide for Families”
- “Rare Disease Advocacy: A Beginner’s Toolkit”
- “Understanding Clinical Trials: What Patients Need to Know”
- Informative videos and podcasts featuring experts, patients, and advocates sharing their insights and experiences.
Partnerships and Affiliates: Amplifying Our Impact
RareGen collaborates with leading organizations to enhance its reach and effectiveness. These partnerships help drive research, advocacy, and patient support on a global scale.
Highlighted Collaborations
NORD (National Organization for Rare Disorders):
- RareGen works with NORD to connect patients with resources, participate in advocacy campaigns, and push for policy changes that benefit the rare disease community.
Global Genes:
- Partnering with Global Genes allows RareGen to provide educational programs and workshops for patients and caregivers, equipping them to advocate for better care.
Children’s Liver Foundation (India):
- Collaborating on the post-transplant medication initiative to deliver life-saving resources to underserved populations.
Other Affiliates:
- Medical research institutions contributing to youth-driven studies.
- Advocacy organizations working together to create a unified voice for rare diseases
Why These Partnerships Matter
These collaborations ensure RareGen can amplify its impact, bring diverse expertise to its programs, and deliver better outcomes for patients and their families. Visitors can learn more about these organizations and how their missions align with RareGen’s.
FAQs: Your Questions Answered
What is a rare disease?
Rare diseases affect fewer than 200,000 people in the U.S., but their collective impact is vast, affecting over 300 million worldwide.
Why are rare diseases difficult to diagnose?
Rare diseases often mimic more common conditions, and a lack of awareness among healthcare professionals can lead to delays in diagnosis.
How many rare diseases have treatments?
Only about 5% of rare diseases have approved treatments, highlighting the urgent need for research and innovation.
What is RareGen’s mission?
RareGen unites youth globally to advocate for rare diseases, empower patients, and drive meaningful change through education, collaboration, and support.
Who can join RareGen?
Youth aged 12-21 are encouraged to participate, but anyone passionate about rare disease advocacy can volunteer or support our initiatives.
How does RareGen use donations?
Donations fund critical programs, including medication distribution, youth advocacy training, and participation in global conferences.
What makes RareGen unique?
RareGen is the first youth-led nonprofit in the rare disease space, focusing on amplifying young voices to create global change.
Why Explore the Resources Page?
RareGen’s Resources Page is your gateway to understanding rare diseases, equipping yourself with advocacy tools, and joining a supportive global network. Whether you’re a patient, caregiver, advocate, or supporter, these resources are tailored to empower you in your journey.
RareGen is here to provide the knowledge and support you need to make a difference in the rare disease community. Explore the resources and take the first step toward driving change today!