Patient Empowerment Programs

Patient empowerment is “a process through which people gain greater control over decisions and actions affecting their health.”

~ World Health Organization (WHO)

NOTE: Program funding is heavily dependent on the availability of funds.

According to the Oxford English Dictionary, quality of life (QoL) is a measurement of the standard of health, comfort, and happiness experienced by an individual or group. At Sickle Cell Foundation of MN, we recognize that meeting our “basic” needs is part of our survival and “thriving” moves us beyond basic needs and allows us to improve our overall lived experiences as well as our quality of life, which ultimately leads to improved health outcomes. 

Through our holistic approach to improving quality of life, SickleCellMN provides many opportunities for education and community engagement, We also offer one-on-one and group support as well as limited financial assistance with some household and medical-related expenses.

As a small not-for-profit organization, we rely on the generosity of our program partners, sponsors, and donors, therefore, availability of financial resources may be impacted by budgetary limitations.

Using Your Voice to Encourage Yourself and Others

*Support group meets at 6:30 PM on the last Thursday of each month and is designed for all SCD community members ages 16+.

Community-wide Empowerment Circle

Improving quality of life involves more than routine doctor’s visits, hospitalizations, or prescription refills. When confronted by illness, many individuals and caregivers seek professional help and advice from their doctors, however, affected individuals and communities also rely on support from family members, peers, other persons living with sickle cell disease and the community-based organization.

Support & Empowerment groups provide a safe space to:

  • Meet others in the sickle cell community

  • Discuss the challenges related to living with sickle cell disease

  • Share your encouraging victories and life lessons with others

  • Gain valuable insight and resources that can help improve your quality of life

Having a “safe” space to discuss the challenges and the triumphs of living with or caring for someone with sickle cell disease is critical to combating isolation, anxiety, and depression. At SickleCellMN we strives to create support groups, networks and activities that foster community, encouragement, and shared learning opportunities between individuals and families affected by sickle cell disease.

NOTE: To maintain the privacy of participants, registration is required each month!

Co-hosted by Sickle Cell Expert and National Speaker on Healthcare and Racial Justice, Dr. Stephen C. Nelson and Warrior Caregiver, Rae Blaylark, President of Sickle Cell Foundation of MN!

Ask Dr. Nelson: A Townhall-style conversation with and for the SCD Community

Townhalls are designed to be a safe space to openly ask questions and discuss health, healthcare, and the many things that matter to the sickle cell community.

Monthly discussion topics are chosen by attendees and can be submitted in advance at ask.dr.nelson@sicklecellmn.org.

*This is a LIVE townhall. Attendees who join us via Zoom are invited to participate in open discussions. (We are unable to monitor social media pages during LIVE presentations)

Using Your Voice to Improve Your Health

Our Voices Matter!

Sickle Cell Foundation of MN is committed to speaking truth to power and we need your help to elevate YOUR experiences, both good and bad. SickleCellMN works very hard to build relationships within healthcare and educational systems, and with the medical providers, educators, and leaders within those spaces. It is important that whenever we have the opportunity to talk about the lived experiences of persons living with sickle disease, that we have real life examples of what is actually happening throughout the sickle cell community!

Nothing changes until we make our experiences known and our voices heard! 

We are well aware that this is not always the case and that we must, as individuals and as a community, demand accountability and improved care for each and every warrior! We also recognize that every interaction is not a negative interaction and that there are many incredible individuals working within the healthcare system who should be recognized for their expertise, empathy and compassion toward our unique individual and community needs.

For these reasons, we have developed a reporting system to track the feedback that we receive from our sickle cell community, but we need you to use your voice! Help us track and report your healthcare experiences by completing the experience form. 

  • • All feedback is important and by sharing your positive experiences we can:

    • Provide this feedback to schools, teachers, hospitals and providers who are making improvements

    • Provide recommendations and feedback to others who are looking for knowledgeable and compassionate care in Minnesota

  • • Sharing you or your loved one’s negative experience(s) allows us to better advocate for the sickle cell community by providing accurate accounts of personal LIVED experiences of persons living right here in Minnesota!

    • Sharing your negative experiences with us allows the community to have a safe space to report your experiences without worrying about how it may or may not negatively impact you or your child’s care.

  • 1. Community advocacy & storytelling

    2. Internal tracking & reporting

    3. Identifying sickle cell champions within healthcare settings

    4. Institutional accountability (filing formal complaints)

    5. Legislative efforts

Self empowerment is “An individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs and rights...”

~ UC Santa Cruz Disability Center

Get in touch with us.

Learn more about our patient support & assistance programs for persons living with or caring for a child (<18) with sickle cell disease by completing our contact form and one of our community resource staff persons will contact you.

If you wish to apply for any of our financial assistance programs, please begin by completing our Patient Assistance Form.