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Improving the lives of families impacted by sickle cell, one piece of legislation at a time.

The KMD Advocacy Center envisions impactful results-oriented legislative and social advocacy to improve the life outcomes of individuals living with sickle cell. This advocacy aims to ensure that sickle cell patients and their families can exercise their desires and rights as citizens to live fulfilling lives and contribute to their communities.

About Us

Federal Advocacy for Equitable Sickle Cell Care

KMDA collaborates with leaders in healthcare and policy to secure federal support for comprehensive sickle cell care. Our current focus is driving critical policies that provide increased funding for research, improved access to specialized healthcare, and inclusion of sickle cell as a national public health priority.

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Legislative Advocacy

Engage lawmakers, propose legislation, launch advocacy campaigns, and build coalitions to increase federal investment in sickle cell care.

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Lead Policy

Lead policy implementing research and update of data on number of individuals living with sickle cell in the United States including those not captured by newborn screening.

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Increased Funding

Supporting essential research and development of new therapies.

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Expanded Access

Building treatment centers and improving patient access to specialized care.

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Public Health Priority

Raising awareness and prioritizing sickle cell disease at a federal level.

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2024 Legislative Highlights

KMDA has made significant strides in advocating for policy changes that support sickle cell treatment and research. Here are some of our recent achievements:

Sickle Cell Disease Treatment Centers Act of 2024

Legislation to increase the number of comprehensive treatment centers for accessible care.

Sickle Cell Care Expansion Act of 2023

Act to address the shortage of skilled healthcare professionals for sickle cell care through scholarship and loan repayment programs.

How can we help you make transformative change?

At KMD Advocacy Center, we believe the power of knowledge, compassion and generosity can drive transformative change for those effected by sickle cell. We invite and create a culture of recognition, investment and philanthropic support around sickle cell disease the same as with other life-threatening illnesses. Your support is crucial in helping us advance our mission and make a meaningful impact for sickle cell.

Donate

Contribute financially to support our work increasing the federal investment, equity in treatment and care, accurate data to guide investment and programs

Advocate

Join our campaigns to promote legislative changes and increased funding for sickle cell care and research.

Contribute financially to support our work increasing the federal investment, equity in treatment and care, as well as accurate data to guide investments in programs.

Programs and Initiatives

Services

Environmental Conservation Fund

Chari recognizes the financial aspect of environmental conservation efforts.

$200,000 of $300,00 raised

Services

Community Development Projects

Chari invests in community development projects that aim to uplift entire communities economically.

$200,000 of $300,00 raised

Services

Microfinance and Entrepreneurship Programs

Chari facilitates economic empowerment through the allocation of funds to microfinance.

$200,000 of $300,00 raised

Services

Healthcare Fund for Medical Access and Research

Chari directs funds towards healthcare initiatives, supporting medical clinics, awareness campaigns.

$200,000 of $300,00 raised

Services

Education Fund for Scholarships and School Infrastructure

Chari allocates funds to support education through scholarships and the improvement of school infrastructure.

$200,000 of $300,00 raised

Services

Emergency Fund for Immediate Assistance

Chari maintains an emergency fund to provide swift financial assistance during crises and natural disasters.

$200,000 of $300,00 raised

Projects for the KMD Advocacy organization

Our projects reflect our dedication to advancing sickle cell care, supporting education, promoting healthcare access, empowering communities, and driving impactful change.

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Education

Global Sickle Cell Alliance

The Global Sickle Cell Alliance is a collaborative project aimed at building international partnerships to address sickle cell disease on a global scale. By working with organizations, healthcare providers, and researchers worldwide, we aim to share knowledge, resources, and best practices to improve the diagnosis, treatment, and care of sickle cell disease globally.

Read more
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Education

Sickle Cell Community Empowerment Program

The Sickle Cell Community Empowerment Program is designed to strengthen the voices of individuals and families affected by sickle cell disease. This project aims to empower communities through advocacy training, leadership development, and capacity-building initiatives. By equipping community members with the skills and knowledge needed to advocate for their needs, we foster a more inclusive and supportive environment for those living with sickle cell disease.

Read more
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Emergency

Sickle Cell Research and Innovation Hub

The Sickle Cell Research and Innovation Hub is dedicated to advancing scientific research and developing innovative treatments for sickle cell disease. This project aims to support cutting-edge research, foster collaborations between scientists, and expedite the development of new therapies that can significantly improve the lives of individuals living with sickle cell disease.

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Welcome to the New Generation of Events

Support our mission through volunteering, donations, and advocacy.

Chari Charity Gala
Chari Walkathon for Clean Water
Chari Virtual Charity Auction
Chari Corporate Challenge
Chari Charity Auction and Art Exhibition
Chari Youth Volunteer Challenge
Chari Virtual Benefit Concert
Chari Community Fun Run/Walk

The actual numbers of individuals with sickle cell has not been determined but is in the millions worldwide. People from varying ethnic and racial backgrounds are living with sickle cell including individuals of African American, Greek, Latino, SE Asian, African, Middle Eastern, Caribbean, Central and South America and other European ethnicities.

Central and South America and other European ethnicities.

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While the life expectancy of patients with sickle cell disease has increased with improved childhood treatment, many lack access to specialized providers needed who have an understanding of chronic multidisciplinary care management. Even in the United States equity of care and lack of access to care and shortages of transition to adulthood programs are prevalent.

care and shortages of transition to adulthood programs are prevalent.

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Sickle Cell disease is one of the most common inherited blood disorders in the United States, but the exact number of people living with sickle cell disease and sickle cell trait are unknown.

living with sickle cell disease and sickle cell trait are unknown.

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Significant disparities exist for funding for inherited blood disorders. Although sickle cell is three times as prevalent as cystic fibrosis, NIH funding cystic fibrosis was $2807 per person vs $812 per person for sickle cell.  In philanthropy $7,690 was spent per person with cystic fibrosis vs $102 per person with for sickle cell. This also translates into less research dollars and less discoveries of new treatments. (Farooq, Mogayzel and Lanzkron: JAMA Network Open, 2020:3)

(Farooq, Mogayzel and Lanzkron: JAMA Network Open, 2020:3)

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If individuals and families living with sickle cell are afforded equitable care, treatment and employment opportunities this would also translate into increased economic contributions to the communities, states and nation in which they live. 

the communities, states and nation in which they live. 

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Core Values

We stand for increased national investment, equity in treatment, transparency, and education.

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Our contacts

info@kmdadvocacy.org

+1 (248) 704-9116

244 Maincentre
Northville, Michigan  48167

© KMD Advocacy Center. All Rights Reserved. 2024.
KMD Advocacy Center is a 501(c)4 non-profit organization. Not tax-deductible