Advocacy

Two-Minute Advocacy: Ensuring Telehealth Coverage

Telehealth services have been critical to maintaining safe and consistent access to health care for patients with rare diseases such as...

Rare Disease Day Reflections: My Rare Disease Journey

Executive Director Rachel Alvarez shares a deep dive into her history as a rare disease patient, and what it means to lead Cure CMD.

Five-Minute Advocacy Update

Want to advocate on behalf of yourself or a loved one with CMD? Right now, several proposed U.S. bills exist that would benefit the CMD...

Co-pay Assistance Programs Essential to Patients and Caregivers

Ohioans have been focused on protecting their family from the COVID crisis. But that is not the only public health crisis facing...

STAT Act Aims to Speed Treatments for Rare Disease

Use the template here to urge your Congressperson to support it! In 1983, the U.S. Congress passed The Orphan Drug Act, a law that...

Cure CMD Volunteer Charlene York Honored as NORD Rare Impact Awardee

Cure CMD would simply not be what it is today without the dedication, hard work, and commitment of our volunteers. They are the reason we...

Rare Disease Week - 2020 Report

The Cure CMD Advocacy Team was represented by 13 advocates at Rare Disease Week in Washington, D.C. during the last week of February....

2020 Rare Disease Day: Show Your Stripes

In the Congenital Muscular Dystrophy (CMD) world, we know our disease is rare. And if you look at the numbers in each subtype, the groups...

Cure CMD Advocacy Update - January 2020

Rare Disease Week 2020 If you are planning to attend Rare Disease Week on February, check out the Next Steps as you prepare to travel to...

Rare Disease Week 2020

If you plan to attend, your next steps are: Read Rob Sunris' blog post on last year's Rare Disease Week. Attend the Information Webinar...

2020 Rare Disease Week: Join the Team

As part of the rare disease community, we are all advocates. We push for inclusion and accommodations at schools, teach our doctors...

Rare Disease Week November 2020

Rare Disease Week on Capitol Hill is February 25-28, 2020. The Cure CMD Advocacy Team is looking for more members to attend. Want to join...