We’re thrilled to have you here! Our Network brings together individuals and organisations from all walks of life to collaborate on advancing patient-driven rare disease research.
Whether you’re a patient, caregiver, researcher, healthcare or industry professional, your contributions matter. Many of our members wear multiple hats, so please select all the roles that reflect who you are—your experiences and skills are invaluable to our mission to drive meaningful change in rare disease research!
The Rare Disease Research Network is committed to creating a welcoming, supportive, and safe space for everyone in the rare disease community. Here, we work together to drive progress in rare disease research through collaboration and mutual respect.
We’re excited to have you join the Rare Disease Research Network! Signing up is quick and easy—it only takes a few minutes and just a few key details. Short on time? No problem! You can start with the basics now and update your profile later.
*Important: Once you choose your username, it can’t be changed, so pick one you’ll love.
Welcome to the Rare Disease Research Network!
Thank you for creating an account and becoming part of our community. By joining us, you’re helping to build a vibrant network working together to make a real difference in rare disease research. Your participation is truly valued, and we’re so glad to have you here.
Please note: Your profile will be reviewed by an admin within the next 48 hours. We look forward to you getting started on your research journey.
You’re welcome to share website links beyond just research-related content. Feel free to include links to professional social media profiles like LinkedIn, YouTube channels, organisation pages, researcher bios, or any other relevant content that reflects your work, research, or interests in rare diseases.
These categories are designed to help highlight your research interests on your profile. Once you’re logged in, they power our ‘search’ and matchmaking features, making it easier for others with similar interests to connect with you. We recommend selecting at least three categories, and you’re welcome to suggest your own tags if you don’t see what you’re looking for on the next page.
This list is just a starting point. In the next steps, you can add more details to your profile bio, including the conditions you’re passionate about, have experience with, or are personally connected to.
Use these tags to showcase your research interests, whether they relate to conditions you or someone you know has experienced, or diseases you have expertise in or want to explore.
Our tags are based on the ORPHAnet database and are updated annually to stay accurate and comprehensive. For better searchability, we recommend including all relevant disease acronyms, synonyms, and alternate names. Suggestions will appear as you type at least three characters.
Your ‘Summary Headline’ is a quick snapshot that helps other members find you when browsing profiles or searching for collaborators. Keep it short and focused on the key details. From your headline, members can click through to your ‘About Me’ section for a deeper dive into your background and goals on RDRN.
A few tips:
* Avoid sharing personal medical information—naming conditions is fine, but please don’t include private details like medical records or treatment specifics.
* For your photo, choose a clear, community-friendly headshot. Our admin team will review it to ensure it aligns with our guidelines.
An approved connection is someone you’ve either requested to connect with and they’ve accepted, or someone you’ve approved when they added you.
Anyone can be a mentor—you don’t need to be a researcher or clinician. Whether through lived experience or research, there are many valuable insights you can share through peer support and mutual learning. You can commit as much or as little time as you like, even just offering to answer a quick question on a topic you’re familiar with.
We also highly recommend subscribing to our newsletter to stay updated on relevant opportunities and research ideas.
