Programs

Community Support Interactions

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The Sickle Cell Community of Buffalo has needed support and resources for a long time. It is finally here!

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To reach as many people as possible, the Community Support Interactions will be in-person and virtual (hosted on Zoom).

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Children, teens, adults, and caregivers will each have their own safe space to gather and communicate. 

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Public Outreach & Education Services (POES)

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Community Health Workers and trained volunteers facilitate sickle cell trait (SCT) and sickle cell disease (SCD) educational presentations in:

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• Public schools, colleges, and universities.

• Places of worship

• Workplaces and trade organizations

• Civic and social organizations

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Transitions

To assist teens and parents prepare for the eventual transition from childhood to adulthood, and moving on to adult medical care, a series of workshops will be offered quarterly.

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Because of our amazing pediatricians and nurses, our children are growing up and growing older with sickle cell disease. Transitions will support their continued growth and well-health.

The sickle cell transitions program supports adolescents and young adults with sickle cell disease and empowers them to transition into adult medical care and adulthood.

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Monthly Transition Clinics
Our monthly transition clinics provide patients and their families with transition education and support,

including:
Sickle Cell disease education - From providers and advocates, seminars, etc
Independent self-care practices - informational text, conversations, etc
Navigation of complex adult health care systems - Through discussion, seminars, etc
Peer and parental social support- Transportation, Referrals, etc
Eventually- Career navigation, resumes, job and housing assistance. 

Annual Sickle Cell Transition Day
Our Sickle Cell Transition Day celebrates patients who are graduating from the program and provides an opportunity for patients and families to meet and greet with adult health care providers.

Annual Sickle Cell Education Day
Our Sickle Cell Education Day provides patients and caregivers with an interactive educational

experience, including learning about health care systems, insurance needs and future career planning.
 

Topic: SCWB Transitions program monthly meeting.

Meetings are held every second Tuesday of the month via hybrid. 

Next meeting will take place in October 2024.

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Become a mentor today!!! 

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Care Coordination

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After transitioning from pediatrics to adult medical care, many young adults are lost to

care. Primarily due to the lack of adult sickle cell comprehensive treatment programs.

Community Health Workers (CHW), work to identify adults lost to care and

connect them to qualified practitioners, a health home, referrals to other

sub-specialties, and address social determinants to quality healthcare.

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Supports

Our Sickle Cell support group takes place every third Thursday of the month. 

our mission is to support the needs of our sickle cell warriors and their families,

ensure adequate care, and to provide resources and tools that will enhance

warriors' well-being and provide longevity.

Join us today! Send us a message. Spread the word, tell a friend or two.

We are Stronger together.

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Resources:

-ASH guidelines for sickle cell -

https://www.hematology.org/education/clinicians/guidelines-and-quality-care/clinical-practice-guidelines/sickle-cell-disease-guidelines

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-Sicklecellspeaks.com 

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-https://drive.google.com/file/d/1BjH9fGVQyFnL24_ntQUIyEKip-i6bOVq/view?usp=sharing

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- Patient Information for CASGEVY https://pi.vrtx.com/files/uspi_exagamglogene_autotemcel.pdf  

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