The Children's Inn at NIH Support Community

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Today at the INN: March 9

By BKuz · Posted yesterday at 3:22 pm
Discussion in General · 0 replies
Today at the Inn.... LearnINN - Storytelling with Ermyn! 4:30PM Parent Reception 4:30PM Seated Massage 5-7PM Family Dinner 6PM BINGO!! 7PM Hope to see you there! To see what's going on the rest of the ...

Support your group and raise awareness with badges

By Walter · New reply March 8, 2010
Journal · 43 replies
Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

3 years since last TRAPS fever!

By althea · New reply March 5, 2010
Journal · 21 replies
My son is now 19 years old and in his second year of college. He takes no meds. He does still take a Fish Oil capsule daily. No fevers, no TRAPS symptoms now for 3 years!!! He lived in a college dorm ...

NIH wait

By MrsMikeyFelter · New reply March 4, 2010
Discussion in TRAPS · 7 replies
How long were you on the waiting list before you got an appointment at the NIH? We have been on the list for almost 2 years now. Elaina has only had her diagnosis for about 6 months ...

Today at the INN: March 4

By BKuz · Posted March 4, 2010
Discussion in General · 0 replies
Today at the Inn.... Field Trip to VisArts! 4PM Reflection Time with Marga 4:30PM Grocery Store Run 6:30PM ExploreINN! 7PM English Class 7PM Hope to see you there! To see what's going on the rest of the ...

World Rare Disease Day

By Brian · New reply March 4, 2010
Journal · 14 replies
In recognition of Rare Disease Day 2010, Inspire and the National Organization for Rare Disorders conducted a survey of Inspire members with rare disorders. The results are enlightening, and I encourage ...

Anyone out there RECENTLY with TRAPS diagnosis?

By RushRx · New reply March 3, 2010
Discussion in TRAPS · 8 replies
Hey, Just joined this website, but then did not write for awhile because I was looking at a lot of older discussions. Just wondering if there is anyone out there that has recently seen Dr. K and is being ...

Today at the INN: March 3

By BKuz · Posted March 3, 2010
Discussion in General · 0 replies
Today at the Inn.... Music with Vera Owens! 5PM Arts INNplace!! 7PM Hope to see you there! To see what's going on the rest of the month check out the Inn's website at childrensinn.org and follow these ...

Today at the INN: March 2

By BKuz · Posted March 2, 2010
Discussion in General · 0 replies
Today at the Inn.... LearnINN 4:30PM Parent Reception 4:30PM Seated Massage 5-7PM Family Dinner 6PM Music with Niki! 6:30PM Grocery Store Run 6:30PM Scrapbooking! 7PM Hope to see you there! To see what's ...

Today at the INN: February 24

By BKuz · Posted February 24, 2010
Discussion in General · 0 replies
Today at the Inn.... AdventureINN Field Trip to the National History Museum! 3:30PM Family Dinner 6PM Arts INNplace! 7PM Hope to see you there! To see what's going on the rest of the month check out the ...

Today at the INN: February 23

By BKuz · Posted February 23, 2010
Discussion in General · 0 replies
Today at the Inn.... LearnINN- Art and Creativity! 4:30PM Parent Reception 4:30PM Seated Massage 5-7PM Family Dinner E Dining Rm 6PM Grocery Store Run 6:30PM Professional Sports BINGO! 7PM Hope to see ...

Today at the INN: February 17

By BKuz · Posted February 17, 2010
Discussion in General · 0 replies
Today at the Inn.... Free Dinner Trip to Ledo's Pizza! 4:45PM (Please sign up at the Welcome Desk!) Arts INNplace! 7PM Hope to see you there! To see what's going on the rest of the month check out the ...

Inspire members featured

By Brian · New reply February 16, 2010
Journal · 33 replies
Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...

Welcome

By ChildrensInn1 · New reply February 16, 2010
Discussion in NOMID · 1 reply
Dear parents, caregivers and Children's Inn residents: Welcome to the Periodic Fever Syndrome-NOMID discussion group! By Inn resident demand, we can now help you make connections to other families who ...

Today at the INN: February 16

By BKuz · Posted February 16, 2010
Discussion in General · 0 replies
Today at the Inn.... OLYMPICS DAY! 4-7PM with a Pizza Dinner at 6PM! Seated Massage 5-7PM Grocery Store Run 6:30PM Scrapbooking! 7PM Hope to see you there! To see what's going on the rest of the month ...

Severe Aplastic Anemia

By erinspicer · New reply February 15, 2010
Discussion in General · 1 reply
Has anyone been treated successfully for Aplastic Anemia with the ATG serum ...

TRAPS Despiration

By MrsMikeyFelter · New reply February 15, 2010
Discussion in TRAPS · 13 replies
My daughter, Elaina (soon to be 3), was officially diagnosed with TRAPS this summer. She started showing signs at 10 months. Her condition seems to be quite severe, even having an episode that lasted ...

TRAPS - a father from India, Where to get the test?

By Bappaditya · New reply February 9, 2010
Discussion in TRAPS · 5 replies
Dear All, My son, 5 years of age, has been suffering from recurrent fever in a gap of 2-3 months, and the fever followed by skin rashes... Extremely worried we went to Christian Medical College, Vellore ...

A Father from India

By Bappaditya · Posted February 6, 2010
Discussion in TRAPS · 0 replies
My 5 year old Son has is suspected to have TRAPS or PFAPA!! Where can I get the gene test donr? Please HELP ...

The Parents Cry Alone

By JLH1 · New reply February 6, 2010
Journal · 4 replies
There is a family we met through CarePages around the same time my daughter Ashley's illness was first diagnosed. This family includes a teenage girl who like Ashley, was also diagnosed with osteo sarcoma ...

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The Children's Inn at NIH Support Community connects patients, families, friends and caregivers for support and inspiration. The Children's Inn at NIH Support Community is sponsored by The Children's Inn at NIH in partnership with Inspire.