Healthcare is complicated, as a parent, you will need to understand many things and keep track of many things. This toolbox will help you be an engaged and active patient/family member. It is also your one-stop shop for resources, which might be helpful to you and your child.
You are an important partner on your child’s healthcare team. At UF Health, we want you to know that many people are actively working to help keep your child as healthy as possible. This team includes doctors, physician assistants, nurse practitioners, nurses, various therapists, and YOU! We honor four basic principles in working with parents and families as a team:
- Dignity and Respect
- Information Sharing
Family + Patient + Providers = Quality Healthcare. When patients, family members, and healthcare providers work together, the quality of care improves. We respect one another by recognizing the expertise that we all bring to this mutual partnership. When we all share information, good healthcare decisions are made, and our loved ones get better quality care.
Family Toolbox Contents:
Year-round camp serving children ages 7-16 with chronic or life-threatening illnesses and their families throughout Florida.
Summer camp for children ages 6-17 who have any of the neuromuscular diseases in the Muscular Dystrophy Association’s program and who are registered with the MDA.
The Ventilation Assisted Children’s Center Camp (VACC) Camp gives families a fun opportunity to socialize with peers and enjoy activities not readily accessible to technology dependent children.
A week long fully-accessible overnight or day camp in Sorrento, FL for children and adults with disabilities or special needs.
A nonprofit organization which provides therapeutic camping programs for children ages 7-17 with special needs and chronic/terminal medical conditions.
For affordable health care services, free screenings, immunizations and all other local government health services, the Alachua County Health Department is an excellent resource.
Real People. Real Stories. Stories of adults and children with special healthcare needs that can inspire and help improve the lives of others.
Free monthly online magazine written by parents of children with special healthcare needs to provide medical information and personal experience in ways other parents understand.
Transform lives, one wish at a time. Wishes are more than just a nice thing. And they are far more than gifts, or singular events in time. Wishes impact everyone involved – wish kids, volunteers, donors, sponsors, medical professionals and communities.
Formerly the National Transplant Assistance Fund, Help Hope Live is a national nonprofit. The mission is to support community-based fundraising for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses.
Facebook Pages & Groups
Please consider joining us as a Patient or Family Advisor. Participation gives you and/or your family member the opportunity to share your experiences with our health system and your views on how patient care and services can be improved at UF Health Shands Hospital. There are a variety of different volunteer opportunities available for those interested in becoming an Advisor. Patient and Family Advisors and staff work side-by-side to identify issues, brainstorm unique solutions, and implement change.
Here are some organizations that are working to make things better:
- Agency for Healthcare Research and Quality
- American Academy of Allergy Asthma and Immunology
- American Hospital Association
- Catalyst Center
- Cystic Fibrosis Foundation
- Empowered Patient Coalition
- Family Network on Disabilities
- Family Voices
- Florida Hospital Association
- Institute for Healthcare Improvement and National Patient Safety Foundation (IHI/NPSF)
- Institute for Patient and Family-Centered Care
- Joint Commission
- National Organization for Rare Diseases