Why is my Participation Important?
Maintaining the Relationship Between Patients and Researchers is Vital!
There are several ways that you can take action with the SGCC. You may join our contact registry, participate in clinical trials, or participate with associated patient advocacy groups. More information about each is featured in this section. Research offers no guarantees, but one thing is for certain, research cannot move forward with out your help. Every active role a patient takes may possibly play a part in discovering new groundbreaking research and finding new treatments.
Participation in Research Makes it Possible for Researchers to:
- provide the best possible care to patients affected by rare diseases
- improve methods in studying your disease
- achieve deeper understanding of your disease and its causes
- find new treatments
- create new studies
The RDCRN has over 150 clinical sites available, and is adding more every day!
Join the Contact Registry
Join the Contact Registry : Join us in the fight to conquer rare diseases!




