Family support groups /networks

Family support groups /networks

ASCA runs family support network sessions meant for people who are affected by SCD, e.g, patients, parents, carers and any member of the family and / or anyone in the community. Our programs will be held every quarter starting from August with a view to increase the sessions as we go. To register for our free family support group sessions, call us on +61414 309 995 or send your details on the contact page / email. 

  • We hold quarterly informal meetings with families affected to discuss the effects of living with SCD.
  • We share ideas on how to manage the disease
  • We will learn from each other what works and does not work by different people
  • We share what issues the sickle cell disease community are facing and brainstorm ideas on how to tackle these issues.
  • We discuss policy issues and formulate plans on how best to address them.
  • Having experienced people living with the disease will encourage younger people to ask questions and have someone to look up to
  • Medication compliance, daily strategies to deal with condition will be shared within this setting
  • These sessions will be run alongside peer to peer support networks and will be supervised by parents/ carers and ASCA representatives

Community Outreach

Community Outreach

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ASCA runs community education sessions to reach out to at risk communities To register for our free support groups or classes, please call us on +61414 309 995 or send your details on the contact page / email.

We provide information brochures on sickle cell disease symptoms and complications,

Providing the most current research information, targeting progress in treatments and pain management, Providing regular social media updates to ensure those affected have access to key information,

Promoting awareness of the condition via annual sickle cell awareness day and monthly events,

Engaging community groups and hospitals to provide a platform where awareness of sickle cell disease can be promoted.

Peer to peer support networks

Peer to peer support networks

ASCA runs peer to peer support networks connecting people living with SCD. This program is beneficial for different aged groups who will learn from older each other’s experience. To be part of this program,  call us on +61414 309 995 or send your details on the contact page / email.

Peer to peer support networks
  • Our programs will be run alongside family support group meetings where people from different age groups will be encouraged to share their stories to encourage younger patient’s journey of living with SCD:
  • Having experienced people living with the disease will encourage younger people during the journey of living with this disease
  • Medication compliance, daily strategies to deal with condition will be shared within this setting These sessions will be will be supervised by parents/ carers and ASCA representatives

University / TAFE information sessions

University / TAFE information sessions

TAFE EDUCATIONAL SESSIONS

ASCA will continue to approach different universities and Tafe / Colleges to provide talks / information sessions about sickle cell disease to nursing students. To register for our free college / Tafe / university information sessions,  call us on +61414 309 995 or send your details on the contact page / email.

  • Information sessions will be provided to nursing students to give them an idea of what people living with sickle cell disease experience.
  • Up to date information will be given out to students.
  • Families affected will give real life stories about the issues people living with SCD through in ED to prepare students of what they may expect when they assist people living with SCD.

Hospital emergency departments (E.D) information sessions

Hospital emergency departments (E.D) information sessions

ASCA will continue to approach different hospital to provide information sessions about sickle cell disease. To register for our free information sessions, call us on +61414 309 995 or send your details on the contact page / email.

HOSPITAL EMERGENCY DEPARTMENTS
  • Working with different treating hospitals under the supervision of leading Haematologists trained in treating SCD, information sessions will be provided to ED staff to give them an idea of what people living with SCD experience
  • Families affected will give real life stories about the issues people living with SCD face when they visit hospital
  • This program will be very beneficial to country / remote hospitals where SCD is not very common.

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