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Frequently
Asked Questions
My
child’s inhibitor has been tolerized? Why
can’t we attend?
Are
adults with an active inhibitor invited to attend?
How
will this experience be different than Inhibitor Summits? Where
will we sleep?
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Who
can attend?
Children ages 6-19 living with an active inhibitor that has not successfully tolerized and their immediate families are encouraged to attend. Should the number of applications exceed capacity, preference will be given to families who did not attend last year's event and children who have NOT had a successful immune tolerance experience.
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We attended Inhibitor Family Camp last year. Can we go again this year?
We're hoping to accommodate every family who wants to come, but space is limited. If there is a waiting list, preference will be given to families with an active inhibitor who have not yet had the opportunity to attend.
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My
child’s inhibitor has been tolerized? Why
can’t we attend?
Typically,
children with a tolerized inhibitor can attend “regular” hemophilia camp with
few restrictions. Inhibitor
Family Camp is designed for those individuals that are often the only one with
an inhibitor at camp, or who can’t attend at all.
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Are
adults with an active inhibitor invited to attend?
Not
at this time. We
encourage you to continue to attend Inhibitor Summits and Adult Summits
sponsored by educational funding provided by Novo Nordisk.
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How
will this experience be different than Inhibitor Summits?
Inhibitor
summits provided by NHF and supported by educational grant funding from Novo
Nordisk have been an invaluable experience for individuals and families living
with an inhibitor. Summits
have provided for so many of us the opportunity to feel as though we belong
again in our own community.
Families
at summits have often expressed the desire to have more unstructured time with
each other to build a stronger community of support. A
family camp atmosphere creates a sense of belonging through shared activities
and experiences where minds and bodies are engaged.
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Where
will we sleep?
Camper cabins are split into two sides that include separate sleeping areas and bathrooms with a shared common room. Bed linens, pillows and towels will be provided.
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Will
the location be accessible to wheelchairs and other mobility devices?
Absolutely! One
of the reasons The Painted Turtle, a Member of the Hole in the Wall Gang Camps, was
selected is because of their long-standing commitment to providing camp
experiences to children with serious health conditions. Providing
accessible, safe and fun experiences is their specialty. For
more information on The Painted Turtle, please feel free to visit their website.
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Will
there be medical coverage?
The Painted Turtle will have at least one physician and their Nursing Director on duty
all weekend.
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How
much does it cost to attend?
There
are no fees associated with attending Family Inhibitor Camp. Travel
assistance is available for all eligible participants and their immediate
families. Travel
related expenses to include tolls, mileage and parking will be reimbursed. All
meals will be provided on site.
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What
should I bring?
Your
child’s factor and supplies, as there will not be any on site. Also
bring your enthusiasm and willingness to reach out so we can learn from each
other!
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Will
there be child care available?
The Painted Turtle will provide a “camp pal” assigned to your family whose job it will
be to show you around the camp, as well as to bring your children to activities
so that parents may attend sessions.
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What
about patient confidentiality?
Information
that you share or hear will be treated with the utmost respect and never
disclosed without your permission. We
want participants to feel comfortable so that we may support one another.
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