Be part of the journey
For families, patients and caregivers
Join the RARE-X Data Collection Program
The STAR Foundation is partnering with RARE-X to build a data collection program for Salla families. When you participate in the Salla data collection program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.
The Program aims to:
· Inform researchers how Salla changes over time
· Enable better data to use in clinical trials
· Give 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
Our goal is to make the process as easy as possible for you. By clicking on the link below, you can learn more about this one-of-a-kind data collection program and begin the first step in making your patient information available to researchers.
Join our family contact database
The STAR Foundation has established a contact database for family and caregiver information to provide families with targeted information regarding patient community support, emerging research efforts, and treatment information.
Part of this registration asks for primary and specialty care provider contact information. This data will be used to build a database of caregivers providing support to FSASD patients around the world. Periodically, STAR Foundation will reach out to those care providers and facilitate the exchange of knowledge to improve patient treatment out comes across the spectrum.
Every last bit of information helps in the study of rare disease. Registrant information will not be shared with anyone without your permission and is stored in a secure database.
For researchers and volunteers
Join our research consortium
Please sign up below to receive further information on the FSASD Consortium. The Consortium, comprising worldwide academic clinical and scientific experts, provides a unique platform for collaboration, data sharing, andcollective problem-solving. Your involvement could make a significant impact on the lives of those affected by FSASD, and we invite you to join us in this crucial mission to enhance our understanding and treatment options for thisrare disorder.
Volunteer your time and expertise to make an impact
STAR is dedicated to supporting those affected by these often-overlooked conditions, and we believe in the transformative power of volunteers like you. We are reaching out to individuals who are passionate about making a meaningful impact in the realm of rare diseases.
By joining our team, you have the opportunity to contribute to initiatives that raise awareness, provide support, and make a tangible difference in the lives of individuals and families navigating the challenges of rare diseases. Whether you have a few hours to spare or want to engage more deeply, your commitment can be a source of strength and resilience for those in need.
Together, let's build a community that advocates for change, fosters understanding, and offers a helping hand to those facing the unique struggles of rare diseases. Join us in our mission to make a lasting impact and create a brighter future.
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