Welcome to the Rare Disease Research Network! We’re delighted to have you with us. The Rare Disease Research Network welcomes individuals and organisations from diverse backgrounds and areas of expertise to join forces in accelerating patient-initiated rare disease research. We understand that many of you bring multiple skills and experiences, so feel free to select as many identifying categories as apply to you.
The Rare Disease Research Network is dedicated to fostering a collaborative, respectful, and secure environment where members of the rare disease community can come together to advance rare disease research.
We can’t wait to welcome you to RDRN! Sign-up takes only a few minutes and requires just a few key details. Short on time? No worries—you can complete the basic information now and return later to finish your profile.
Please note that once your username is set, you will not be able to edit it later.
We are thrilled to welcome you to the Rare Disease Research Network! Thank you for creating an account and joining our community.
By joining our platform, you’re contributing to a growing network of individuals, researchers, and advocates working together to make a difference. Your involvement is invaluable, and we’re excited to have you with us as we strive to foster collaboration in the rare disease space.
Please note that your profile will be reviewed and approved by an admin. We aim to do this within the next 48 hours.
Please note that your website links do not have to be strictly research-related. Feel free to include any relevant links such as professional social media profiles like LinkedIn, YouTube channels, social media accounts, researcher bios, organisation pages, or any other appropriate website content related to your work, research, or rare disease interests.
These categories are general guidelines for showcasing your research interests on your profile. Once logged in, they help in the ‘search’ matchmaking feature, allowing you to connect with others who share similar interests and making your profile easier to find. We recommend selecting at least three. You can also suggest your own tags if you can’t find what you’re looking for on the next page.
This list isn’t exhaustive—in the next steps, you can elaborate further on your profile bio and the conditions you’re interested in, you or someone you know lives with, or you have expertise on.
Use these tags to indicate your research interests, whether they represent conditions you or someone you know lives with or diseases you have expertise in or wish to explore.
Our tags are adapted from the ORPHAnet database and are updated annually for accuracy. To improve searchability, we recommend including all relevant disease acronyms, synonyms, and alternate names. Tag suggestions will appear once you’ve typed three characters.
Your ‘Summary Headline’ is a concise snapshot that other members will see when searching for potential collaborators and browsing profiles. Keep it brief and to the point, focusing on the essential details. From your profile summary, members can click through to your ‘About Me’ section for a more comprehensive look at your background and what you’re seeking on RDRN.
Please avoid including personal medical information—names of conditions are fine, but refrain from sharing sensitive details like medical records, treatment specifics, or other private information.
For your photo, we recommend using a clear, community-friendly headshot. Our admin team will review it to ensure it meets our guidelines.
An approved connection is someone who you have requested to connect with and they have accepted, or you have approved personally 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 little time as you like, even offering to answer a quick question on a topic you’re familiar with.
We highly recommend subscribing to our newsletter to stay informed about relevant opportunities and research ideas.
