Lani Knutson, Advocacy Team LeaderApr 41 minTwo-Minute Advocacy: Ensuring Telehealth CoverageTelehealth services have been critical to maintaining safe and consistent access to health care for patients with rare diseases such as...
Rachel AlvarezFeb 2411 minRare Disease Day Reflections: My Rare Disease JourneyExecutive Director Rachel Alvarez shares a deep dive into her history as a rare disease patient, and what it means to lead Cure CMD.
Lani Knutson, Advocacy Team LeaderSep 4, 20212 minFive-Minute Advocacy UpdateWant 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...
Cure CMDSep 4, 20213 minCo-pay Assistance Programs Essential to Patients and CaregiversOhioans have been focused on protecting their family from the COVID crisis. But that is not the only public health crisis facing...
Lani Knutson, Advocacy Team LeaderMay 1, 20212 minSTAT Act Aims to Speed Treatments for Rare DiseaseUse the template here to urge your Congressperson to support it! In 1983, the U.S. Congress passed The Orphan Drug Act, a law that...
Terry SeluckyOct 17, 20201 minCure CMD Volunteer Charlene York Honored as NORD Rare Impact AwardeeCure CMD would simply not be what it is today without the dedication, hard work, and commitment of our volunteers. They are the reason we...
Lani Knutson, Advocacy Team LeaderMay 2, 20202 minRare Disease Week - 2020 ReportThe Cure CMD Advocacy Team was represented by 13 advocates at Rare Disease Week in Washington, D.C. during the last week of February....
Lani Knutson, Advocacy Team LeaderFeb 16, 20202 min2020 Rare Disease Day: Show Your StripesIn the Congenital Muscular Dystrophy (CMD) world, we know our disease is rare. And if you look at the numbers in each subtype, the groups...
Lani Knutson, Advocacy Team LeaderJan 12, 20201 minCure CMD Advocacy Update - January 2020Rare 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...
Lani Knutson, Advocacy Team LeaderDec 5, 20192 minRare Disease Week 2020If you plan to attend, your next steps are: Read Rob Sunris' blog post on last year's Rare Disease Week. Attend the Information Webinar...
Rob SunrisNov 27, 20192 min2020 Rare Disease Week: Join the TeamAs part of the rare disease community, we are all advocates. We push for inclusion and accommodations at schools, teach our doctors...
Lani Knutson, Advocacy Team LeaderNov 11, 20193 minRare Disease Week November 2020Rare 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...