Advocacy

We believe that collective voices have much more power than any single one. We also believe that it is important not only to advocate for hypoparathyroidism needs but also for legislation that impacts rare diseases in general. 

There are over 7,000 diseases that affect 25-30 million Americans, and 90% do not have an approved FDA treatment. As Natpara’s recall has highlighted within our own community, it is clear that even when there is an FDA-approved treatment, it can be a precarious situation that can have devastating outcomes.

All rare disease communities deserve better – the HypoPara community deserves better.

On this page, you will find tools to support you in joining us by lifting your voice to raise awareness about hypoparathyroidism and the needs of so many rare disease communities.

Advocacy Tools:

 

Policy Search

Find a policy that impacts rare disease based on a keyword search  

Find your representatives

Use this tool to find your U.S. representatives

Open Secrets

Use this tool to track campaigns and understand where money is being spent and leveraged by representatives, as well as organizations 

 

Below are downloadable Tip Sheets from our partners at Everylife Foundation:

How to attend a congressional town hall meeting

Rare Disease Advocacy on Social Media

Scheduling a meeting with your legislature

Foster a relationship with  congress

Comparing state caucuses and advisory councils