Advocacy Groups

Advocacy Groups

The Center for Rare Diseases will offer opportunities for clinical fellows and faculty from divisions across UCLA to participate in the Rare Diseases clinics and meetings to raise education and awareness of rare diseases, thereby accelerating the process of making definitive diagnoses and obtaining appropriate therapy. We will provide lectures to the residents and fellows (internal medicine and pediatrics) to further increase awareness and expedite referrals. Please contact us to schedule a talk.

To educate the UCLA community about rare diseases, The Center will run a seminar series that will bring junior rising stars and senior leaders to campus for 1-2 day visits. The visits with local faculty, lunch with students and postdocs, and dinner with faculty will be modeled after other seminar series. The visit will culminate in a seminar. A schedule of seminars is forthcoming.

To advocate in the community for Rare Disease patients, The Center will champion various advocacy groups that service Los Angeles and California, broadly. The Center will host tables and booths, sponsor educational seminars for patients and activities to encourage patients to meet and help each other, encourage near-campus gatherings of patients and families with fellows and faculty, Q&A days, barbeques, and sporting events. Specifically, the Center will support administratively the mass mailings to patients, families, and other stakeholders that are needed for events.

If your group wants us to present at your event, please contact us.