Air Travel for Wheelchair Users
The US Dept. of Transportation is holding a hearing on March 24 about air travel for wheelchair users, including a discussion about wheelchair damage. You can attend the virtual hearing or submit testimony. Let your voice be heard!
Rare Disease Week is a Wrap!
Thanks to those who participated in Rare Disease Week. Check out RDLA's wrap up of the week. And save the date for next year's IN PERSON event happening February 28 - March 3, 2023.

If you participated this year, we'd love to hear about it. Email Lani Knutson with your report.
Ask your Members of Congress to support:

The Telehealth Extension and Evaluation Act (S. 3593), which will establish a 2-year extension of the telehealth services allowed during the pandemic, while ensuring a thorough evaluation of these services prior to future action by Congress to permanently integrate telehealth into our health care system.

Supplemental Security Income Restoration Act of 2021 (S. 2065/HR. 3824) which will bring much needed and long overdue changes to SSI benefits.
Are you ready to take your advocacy journey to the next level? RDLA is offering a free, six-week seminar series for advocates with prior advocacy experience. Apply here by April 1st.

The next RDLA Monthly Webinar will take place on Thursday, March 24th at 12:00 pm ET.

The National Organization for Rare Disorders (NORD) is hosting a webinar on March 29 to help advocates understand the reauthorization of the Prescription Drug User Fee Act (PDUFA) and its importance to the rare disease community.

News of Note
Cure CMD and 42 other rare disease patient organizations provided comments in response to the FDA’s draft guidance document Real-World Data: Assessing Registries to Support Regulatory Decision-Making for Drug and Biological Products. 

The EveryLife Foundation published A Community Vision for a Rare Disease Center of Excellence at the FDA, a paper highlighting the need for a rare disease center of excellence at the FDA to help increase the amount of approved rare disease therapies. 

The EveryLife Foundation for Rare Diseases kicked off Rare Disease Week on Capitol Hill 2022 by joining rare disease leaders in urging Congress to protect and strengthen the FDA’s accelerated approval (AA) pathway. Learn more about accelerated approval on their website.

Know someone who would like to join the Cure CMD Advocacy Team? Email us and we'll add them to the list!