Colorado Rare

03/17/2026

https://livingrare.org/colorado/?fbclid=PAdGRjcAQlhrRleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAafKJRQhWtWib0kgdAwJLETJf-_IaIxHNFkYWq6CeuVh_moIZ5R0N2VCEZCwdg_aem_s0pGv2oHmJEOpMqSJNSJ1g

09/16/2025

Join us on October 6th!

https://secure.everyaction.com/0Qw_A2hRs0-4gCUpb6f4PA2?fbclid=IwY2xjawM2jAhleHRuA2FlbQIxMABicmlkETExVWgwN1BSYkZmZnVmcnFzAR7T1Q5gUd5MGBenCEvBkt08XAnP2zSeOYFMxz25S4dGRn5usTa9eVtFfrvT7Q_aem_gca-wDNrAeLCjKhci_Z2zQ

03/05/2025

Are you registered for Disability Rights Advocacy Day (D-RAD), yet?

On March 6th at 8 am join at the Colorado State Capitol for a day filled with empowerment, education, and advocacy for disability rights.

🔗To RSVP https://www.eventbrite.com/e/d-rad-2025-disability-rights-advocacy-day-tickets-1217169499739?aff=oddtdtcreator

10/23/2024

OUT OF MY MIND just won the Audience Award for Narrative Feature at this year’s Woodstock Film Festival!

Here’s a video of the producer Peter Saraf and Tom (whom this movie is based on) sharing stories about the film’s development and the work that went into making the film truly authentic.

https://www.youtube.com/watch?v=GTYekR7IJFs!

Enjoy behind the scenes stories about how the movie Out Of My Mind came into being.... with producer Peter Saraf, and Production Consultant (and AAC user) Th...

02/29/2024

02/29/2024

Dear Members, Family Members, Advocates, Case Management Agencies, County Leaders and other community members:

The Department of Health Care Policy & Financing (HCPF) recently became aware of an unintended occurrence specifically impacting Long-Term Services and Supports (LTSS) members that resulted from a system update. The occurrence resulted in a subset of LTSS members being scheduled to have their coverage terminated as of February 29, 2024. HCPF is implementing a system workaround, which will reinstate and keep impacted individuals covered until an appropriate resolution is found for their case. We will be issuing new notice of action letters indicating an approval effective as of March 1, 2024 to all members who were impacted. Electronic messages to impacted members are scheduled to be released Thursday, February 29 and USPS mail communications are scheduled for release on Friday, March 1.

If a LTSS member reaches out to you because they received a notice of termination effective February 29, 2024, please share this information with them, as those not receiving their communications electronically may be delayed in receiving a communication via USPS mail.

10/19/2023

“Colorado Medicaid officials said they would continue allowing parents to get paid for the two programs — taking their kids into the community and teaching them “homemaker” tasks.”

Some parents are cautious to celebrate. There will be caps and additional guidelings, but a benefit that so many rely on will continue.

Medicaid officials and parents have debated the touchy subject for the past three years, since the pandemic isolated them in their homes without help

07/26/2023

Hello Colorado Rare Community!

The Colorado Rare Disease Advisory Council (RDAC) is actively seeking input from the community to identify and prioritize issues. Help us chart a path forward by sharing your insights and experiences.

Please take some time to complete our survey or share with your extended network.

In 2022 the Colorado General Assembly passed SB22-186 to establish the Colorado Rare Disease Advisory Council to provide recommendations to the General Assembly.

04/27/2023

Rare Disease Advocates,

We are at a critical time to get the Access to Rare Indications Act introduced in the Senate! We need more advocates in the following states to help us find a democrat to introduce the bill alongside two republican senators who are already ready to introduce the bill - doctors, (and also people who work in doctor’s offices), patients, families, caregivers or anyone else who can write/call to tell their Senator’s staff that insurance companies often refuse to cover medically necessary treatments to rare disease patients. And – that patients only get sicker and their care more expensive while they wait for the care their doctors say they need.

Who do you know that can help in:

Colorado
Delaware
Maryland
Massachusetts
Michigan
New Jersey
Ohio
Oregon
Pennsylvania
Rhode Island
Virginia
Washington

Please reach out to anyone in those states who may be willing to take 2 minutes to have fill out this form asking their Senator to help. Haystack will then do the follow up
!

You must be a resident of one of the following states to participate in this advocacy activity.