The Grab N Go Tool Kit is comprised of four helpful resources to assist patients, family members, caregivers, and all who face the challenges of a chronic illness or rare disease. Included is an 'Apps Page' to assist with organizing medications, appointments, caregiving tasks, and MORE!
TOOLS to Make Life Easier
for Rare Disease Patients and their Caregivers !
*or anyone challenged by a chronic illness
LabTracker Track lab trends to monitor patient health. A handy trifold for patients or caregivers to keep with them, the LabTracker provides an organized format to record your lab results and other important health data. Available at aHUS meetings in printed format, or download the pdf of our 'printer friendly' LabTracker online.
Download the LabTracker by clicking here.
Need extra data grids to record your labs? Download the LabTracker Supplementary Sheet by clicking here.
Patient Self-Advocacy Tool Take charge of your health! Our Patient Self-Advocacy Tool provides an organized format to list concerns, issues, and questions that arise at home between visits to your health professionals. Great for adult patients or those caring for a patient with chronic illness, this trifold is ideal to fill in at home and bring to your next visit to the clinic, hospital, or doctor. Start your next medical conversation as an informed advocate for yourself or a loved one - focus discussion on key medical issues and get the most out of your appointments!
Download the Self-Advocacy Tool by clicking here.
Urgent Care Directives Be proactive! Fill in our Urgent Care Directives bifold with vital information concerning your medical needs. This simple form is great to provide your employer or your child's nurse, outlining actions needed for first responders in case of medical emergencies.
A multi-purpose tool, it's perfect to take with you when traveling away from home. The Urgent Care Directives form states your rare disease diagnosis, provides details regarding specialized care necessary, and offers contact information for your specialists and Primary Care Physician. Atypical HUS families can feel more secure when their loved one must present at an 'away care' clinic or ER for urgent care, knowing that the treating medical emergency team is can begin their response with more robust medical information.
NOTE: The Urgent Care Directives bifold is also handy to provide to physicians 'covering' for your regular doctor over the weekend or during times when your regular doctor is at conferences or on vacation.
Download the Urgent Care Directives tool by clicking here.
Emergency Care Card
A specialized Emergency Card just for aHUS patients and their medical needs! Who speaks for the aHUS patient when accident or injury occurs? Don't leave anything to chance, make certain that your wallet, backpack or laptop case contains the Emergency Care Card.
A smaller format, easily portable version of the Urgent Care Directives bifold, this emergency card outlines your specialized care, contact information for your personal emergency contacts, and contact information for the Patient's Medical Team.
When patients can't speak for themselves, and the caregiver is not immediately available, the Emergency Care Card steps in to fill the information void by providing vital information necessary for emergency treatment that is rapid and appropriate for aHUS patient needs.
NOTE to Parents of pediatric patients: This card fits easily within a clear plastic card badge holder, which can be clipped to the child's car seat frame to provide peace of mind when traveling by car.
Download the Emergency Care Card by clicking here.
Though not a formal asset in our Grab N Go Toolkit, get organized 'on the go' with apps for your smartphone and other devices!
Patients, caregivers, and family members face many challenges in the face of a rare disease diagnosis. Sometimes it can feel like a triple whammy – the diagnosis of serious illness, difficulty finding information about a rare disease, and the impact of treatment, schedules, and emotional stress on the entire family. Wouldn’t it be nice to find some applications for smartphones, tablets, and other devices that would make life easier for everyone?
We’ve combed the web to create an online resource list for patients (with their caregivers and family) challenged with chronic disease issues, ESRD, CKD, transplant concerns, dialysis, treatment schedules, medical appointments, drug lists, nutrition planning, caregiver coordination, and MORE. Organize medical information and care, or use these apps to coordinate tasks and to share information among your support circle.
*Find an great app? Please email Linda@atypicalhus.org with the app's details and a link.
Interested in receiving permission to adapt items in the Grab N Go Toolkit for your rare disease organization or patient advocacy non-profit? Please contact the Grab N Go Toolkit creator, firstname.lastname@example.org.