Supportive care needs of parents and caregivers of children who have rare diseases w/ Sharon King
March 17, 2020 12-2pm, Tuesday
UNC Chapel Hill School of Social Work Auditorium, 325 Pittsboro St, Chapel Hill, NC 27599 Directions and Parking.
**LIVE STREAMING AVAILABLE**
2 Hours (details)
We are streamlining our pricing options !
All in-person lectures will be offered at a discount and include lunch to encourage face-to-face engagement and community building.
**If you can’t make it to UNC-SSW we still offer the Live-Stream option for only $10 more
In-Person – $25.00
Live-Stream – $35.00
*Discount for family members/caregivers – $15.00
**Current UNC-SSW students, staff, faculty, field instructors, and task supervisors** Fee Waived
Everyone is welcome: scholarships also available. Contact Carol Ann Hincy <email@example.com>
Parents caring for a child affected by a rare disease have unmet needs, the origins of which are complex and varied. Parents are seeking information to better understand their child’s rare disease and treatment options. Many parents search for other parents with children who have rare diseases who understand how the condition might impact their lives. Others may be searching for medical information, treatment options, the latest research, and financial aid resources. This workshop will highlight 1) the impact that caring for a child affected by rare disease has on the family system, 2) the financial distress that families face in caring for their child with a rare disease; 3) discuss at least three strategies to improve delivery of care and access to support for families so that they feel confident in caring for their child and making decisions; 4) increase awareness of the need for research in the area of rare diseases.
When Sharon King’s 7 year-old daughter Taylor was diagnosed with CLN1 disease in 2006, she was told there was nothing that could be done and to take her child home and make happy memories for as long as possible. The only thing she knew about the disease was that she could not watch it happen to her daughter without a fight. Sharon founded Taylor’s Tale, a public charity supporting the development and implementation of innovative treatments, practical programs, and beneficial public policies to improve the quality of life for rare disease patients and their families. Through Taylor’s Tale, Sharon has united public officials, researchers, biotech and industry representatives, and patient advocates to gain real progress in rare disease treatment development. Taylor’s Tale initiated a study at the UNC Gene Therapy Center that was later licensed to Abeona Therapeutics and should move to clinical trial in 2019. In 2015, Taylor’s Tale proposed legislation creating the nation’s first Rare Disease Advisory Council. Now called Taylor’s Law, Sharon is a state-appointed member representing patient organizations. A graduate of Leadership Charlotte Class XVI, Sharon was honored as one of Charlotte’s 50 Most Influential Women in 2016, received the Elon Homes and Schools Caring for Children Award in 2013 and the Junior League of Charlotte Outstanding Service Award in 2019. She is past president of the Charlotte Piano Teachers’ Forum, Symphony Guild of Charlotte and Junior League of Charlotte, and she served on the Boards of the Council for Children’s Rights and the Association of Junior Leagues International. She was a North Carolina Delegate to the 1997 President’s Summit for America’s Future. Sharon is a graduate of Meredith College with a bachelor of music in applied piano.
At the conclusion of this workshop, participants will be able to:
1. Identify and describe at least 1 way caring for a child with a rare disease impacts the family system.
2. Name and discuss at least 3 strategies to improve delivery of care, access to support, and decision-making for families caring for their child with a rate disease.
- Dellve L, Samuelsson L, Tallborn A, Fasth A, Hallberg LR.J Stress and well-being among parents of children with rare diseases: a prospective intervention study. Adv Nurs. 2006 Feb;53(4):392-402. PMID:16448482
- Fearnley, R., & Boland, J. W. (2017). Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: A systematic review. Palliative Medicine, 31(3), 212–222. https://doi.org/10.1177/0269216316655736
- Pelentsov, L. J., Fielder, A. L., Laws, T. A., & Esterman, A. J. (2016). The supportive care needs of parents with a child with a rare disease: Results of an online survey. BMC Family Practice, 17 doi:http://dx.doi.org/10.1186/s12875-016-0488-x