We are holding our very first Family Education Event
“Having Emergency Plans” – at home and play – at school and work – in travel”
This event will be for all Missouri families affected by rare disease or chronic illness causing special medical needs.
See Below for more information.
MO Education Day – Public Invite
MO Education Day -Exhibitor-Sponsorship Invite
MO Education Day – Sponsorship Guidelines
What does this mean?
Currently due to conflicting protocols and liability issues,
“Most Paramedics & ER Doctors believe they are prohibited
from administering patient carried specialty medications or
deviating from standard protocols for rare medical needs”
Due to a lack of uniform reporting, nationally we have no
records of how often these events are happening which is
preventing the need of protocol changes being apparent
on the state and national levels.
It is our responsibility to raise awareness for the protection
of our families and friends with SPECIAL MEDICAL NEEDS!
Our paramedics need new protocols allowing for
"administering specialty patient carried meds
& treatment based on the
"EMERGENCY MEDICAL ORDERS" from their specialist.
Typically "special medical" patients are stabilized and
transferred to a Level 1 Trauma Center or for those with
"specialty medications" are held at the local ER until
the “guaranteed safe” meds can be delivered. Both
scenarios result in a delay in treatment.
A delay causing anything from prolonged recovery
to organ damage to loss of life!
We all know time matters and this must be changed!
We need you to join us in this effort,
many voices are heard much better than one!
March 27, 2015 – The following organization are in support of Danny’s Dose.
Coalition for Hemophilia B
COTT – Coalition of Ten Thousand
March 2, 2015 – Local southeast Missouri News Channel, KFVS-12, airs story about the Protocol change. (News Story Link)
Jan 2, 2015 – Wrote to Tila Hubrecht, my newly elected Representative, about the danger in MO for a certain group of individuals with Bleeding Disorders and rare diseases who have to carry their own life-saving medications but can’t have them administered by emergency personnel.
She took action, started making contacts and researching the details surrounding the protocols.