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RMHBDA & COVID-19 Event

Dear Chapter Members & Supporters,

No one is unaware of the deep changes to our everyday lives and the broader world beyond our rural Rocky Mountain havens from the pandemic. However, the mutual support that we love this chapter for is still there, as are our medical resources in providers and in substances used for blood disorders.

Our own plans and observations are pretty much those of the Colorado chapter and the University of Colorado Hemophilia Treatment Center:

RMHBDA EVENTS

With our next event not until May, as of now, we are anticipating holding our summer activities as scheduled, which include;

  • Mile High Summer Camp (July 12-17) [See Colorado Chapter’s note, below,on this!]
  • Big Sky Family Camp (August 21-23)
  • RMHBDA Unite Walk (September 12)
  • RMHBDA Women’s Retreat (November 6-8)

However, we will continue to monitor the evolving reality and respond as things change.

Don’t hesitate to get in touch with Brad or Lisa for any chapter information or help you might need.

Sincerely,
Brad Benne & Lisa Maxwell

Colorado Chapter NHF
March 2020
Program changes:
COVID-19 Event Changes

A Message from University of Colorado HTC

Dear Patients and Families,

We are living in unprecedented times. For days, we have seen increasing urgency regarding COVID-19. At the HTC and the University of Colorado Anschutz Medical Campus, we have now entered a mitigation phase. The chancellor issued a communique that aimed to reduce community spread of the virus, SARS-CoV-2. This has led to our decision to reduce the clinical services at the HTC, and try to have most staff work from home.

This is a big change for everyone. On our end, I am very grateful to all of my colleagues as we struggle to keep our patients and ourselves safe from infection. I have seen incredible situational awareness, resiliency and comradery as we work together in truly unbelievable circumstances.

In order to reduce exposure, we feel the best decision is to start social distancing. This seems to be the most effective strategy to stop the spread of the pandemic virus. We are still here, but reduced in capacity. We are limiting clinic appointments for routine yearly comprehensive visits until this pandemic recedes. We will have staff at the HTC to see acute bleeding or other acute coagulation issues, but we are again limiting the number of patients who come to this campus to those with urgent medical needs.

We will have nurses answering phone calls and emails, pharmacists helping with medications, and there will be a physician and nurse in clinic every day from 9 am – 1 pm to see acute patients.

Please keep informed about COVID-19. We will, and will try to keep you up to date about the HTC through postings, emails and other communication. We really want you to be safe. Please do take social distancing seriously in your own lives. We don't yet know the intensity or duration of this pandemic. We hope to see all of you soon. Please reach out to us. We are here for you.

My best,
Mike Wang, MD
Co-Director, Hemophilia and Thrombosis Center

A Message From NHF Colorado

Dear Community,

We live in a very different world than we did last week. Daily life has been disrupted and some of our most sacred traditions and institutions have gone dark in response to coronavirus (COVID-19). As an organization that works to promote good health, we want to update you on how this pandemic and corresponding actions are impacting operations at NHF Colorado.

  • All events scheduled March 16-May 31, 2020 have been cancelled, delayed, or modified. Following CDC recommendations, we are not planning to convene significant groups people until more is known about the impact of this virus. This includes our smaller scale weekend hikes as well as our signature Education Empowerment Days. Look for more communication in the coming days and weeks about specific changes to each scheduled event.
  • As of now, we are planning to move forward as scheduled with all summer activities, which include our very popular Family Camp, Mile High Summer Camp, and Unite for Bleeding Disorders Walk. However, we are delaying the registration process for these events as we continue to monitor the situation. We will evaluate this rapidly changing situation at the end of this month with the goal of making registrations live in early April, a delay of approximately one month from the typical process.
  • There are no known shortages of inventory for the treatment of bleeding disorders in the US. All manufacturers confirmed this at NHF’s recent Medical and Scientific Advisory Council (MASAC) meeting; COVID 19 epidemic is not a reason to seek additional doses or to stockpile.
  • We will be communicating more frequently and specifically in the next 2 months. You’ve probably received emails by now from companies ranging from your favorite restaurant to your internet service company, and we understand it can be information overload. We will be exploring new and innovative ways to deliver educational messaging and we hope you will embrace more communication from our Chapter during this time.
  • We are here to serve YOU. Although our events will be paused and we won’t be able to provide high impact programming on a group level in the short term, we will be stepping up our capacity to take on individual needs as they arise. Reach out to us by email or phone for updates or for more information on how we can meet your individual needs.

RMHBDA Education Scholarships

Deadline June 1

We believe that knowledge and understanding is the key to the future for the bleeding disorders community. We also understand that generous service and commitment of our members is the reason for the success of RMHBDA. With this scholarship we want to recognize those individuals who have shown commitment to the bleeding disorders community through their actions. We look to all those within our reach; those with bleeding disorders, parents, siblings, etc. We want to reward those who show courage, understanding and a commitment to the betterment of the lives of those affected. We wish all students the very best of luck in their endeavors.

Application period is January 1 through June 1 each year. Any applications that are incomplete or turned in after June 1 will not be considered.

Download Full Documentation & Application

Patient Assistance Programs

A Great Resource from the NHF

“While the ACA’s implementation did many great things to provide access to healthcare coverage for the hemophilia and related bleeding disorders community, affordability still remains an issue for many. NHF’s Public Policy Team is often asked about resources available to assist patients with paying their premiums or out-of-pocket costs. In response to your inquiries, we have developed this document detailing patient assistance programs that remain available to members of the bleeding disorders community. Note the “accurate as of” date in red at the top right-hand corner. As changes are made to any of the programs listed, we will do our best to update the Patient Assistance document, and make the most recent version available to you.

“We have mentioned in previous updates that some insurers are not accepting third party assistance for qualified health plans (QHPs) purchased in the health insurance marketplace. The list currently includes certain insurers in Oregon, Montana, Idaho, New York, Nebraska and Louisiana. Therefore, it is possible that consumers will not be able to use an assistance program if they are enrolled in one of these plans.”

Patient Assistance Programs documents

RMHBDA Patient Assistance Fund Criteria (updated April 2018)

RMHBDA Patient Assistance Application (updated April 2018)

from NHF (updated September 2014)

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Read old articles here.

Our mission is to improve the quality of care and life for persons with inherited bleeding disorders, including hemophilia and von Willebrand Disease through education, peer support, resources, and referral.

RMHBDA is a 501(c)(3) nonprofit organization founded in 2000 and is a chartered chapter of the National Hemophilia Foundation and a member organization of the Hemophilia Federation of America.

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