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HUWE1 + RARE-X Data Collection Program


Together we can accelerate understanding and treatments for HUWE1-related conditions


Louie's Huwe, the 501c3 non-profit dedicated to furthering research into HUWE1-related genetic conditions, has partnered with RARE-X to build a Data Collection Program for the HUWE1 community. We are excited to announce that the program has now been live and collecting data for a full year - a first look at key points from the data is now available!

See the latest...


When you participate in data collection, sometimes called a disease or patient registry, you’ll help accelerate research and the development of new drugs and other therapies. Collecting data is an essential first step on a rare disease research journey and an important way for patients and their caregivers to contribute to advancing care for their communities.


By increasing access to research-ready data, we hope to accelerate the discovery of ground-breaking treatments for HUWE1-related conditions!


The HUWE1 Data Collection Program will… 

  • Help families and caregivers better understand issues and symptoms faced by people with HUWE1-related genetic conditions

  • Inform researchers how HUWE1-related conditions change over time

  • Enable better data to design and use in clinical trials

  • Provide patients the opportunity to participate in clinical trials

  • Reduce the time it takes to study new medicines

  • Speed up the time to get treatments to patients

  • Enable the use of data as a placebo (instead of actual patients) in a clinical trial


There is no cost to participate.


The webinar covered information about how families can get started with the data collection program and answered your questions with RARE-X. Download Launch Webinar Slides and check out the RARE-X Quick Start Guide.


Global Genes + RARE-X


RARE-X is a 501c3 charitable non-profit and collaborative platform for global data sharing and analysis to accelerate treatments for rare disease and has recently announced its merger with Global Genes. Now the HUWE1 community has the opportunity to be part of this.


Together we can help accelerate understanding and treatments for HUWE1-related conditions. All we need to do is to share information via simple surveys about ourselves or our loved one’s HUWE1-related condition and the symptoms. By sharing information we help ourselves and our loved ones, and help each other.

Watch the RARE-X video and find out more about why it's important to participate in data collection programs for rare diesease.


Participation in this effort is one of the most important and critical things we can do as patients, parents and caregivers of people affected by HUWE1! The patient reported outcomes derived from these surveys will supplement clinical reported data in the creation of a deep and robust data collection set for HUWE1-related genetic conditions.

Lucas, Elizabeth and Louie's families are already sharing their HUWE1 symptoms and experiences on the RARE-X HUWE1 Data Collection Program. You too can become a HUWE1 data sharer to help advance research and accelerate treatments. Please join us.

Email Louie's Huwe for more information, follow @louies_huwe on Instagram for the latest updates or register your interest below.


Register your interest

Be the first to get updates from Louie's Huwe about the RARE-X HUWE1 Data Collection Program including any first insights from our community.

*By signing up you agree for Louie's Huwe to email you, we will not share your details with third parties.

Thank you for registering your interest.

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