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help!

nicoledorman
  • By nicoledorman · New reply March 28, 2014
  • Discussion in Rare and Genetic Diagnosis · 6 replies
  • Hello, My daughter is three years old and we have been trying to figure out what is wrong with her for the last few months and I was just wondering if anyone has any ideas or suggestions. Brooklyn was ...

HELP!

nicoledorman
  • By nicoledorman · Posted March 25, 2014
  • Discussion in Undiagnosed Disease Program · 0 replies
  • Hello, My daughter is three years old and we have been trying to figure out what is wrong with her for the last few months and I was just wondering if anyone has any ideas or suggestions. Brooklyn was ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · New reply March 19, 2014
  • Journal · 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • Journal · 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • Journal · 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

ALPS

DebbieDZ
  • By DebbieDZ · New reply February 27, 2014
  • Discussion in Rare and Genetic Diagnosis · 2 replies
  • We are a family with three children. my six-year-old son has been diagnosed with alps. we are looking to connect with families who are going through the same thing. Regards, The Zia Family ...

The Inspire Q&A: Inspire talks with Kathy Nieder, MD

John2
  • By John2 · New reply February 23, 2014
  • Journal · 36 replies
  • The Inspire Q&A: Inspire talks with Kathy Nieder, MD By John Novack, Communications Director, Inspire Dear members, We at Inspire are pleased to bring you the latest in a series of interviews with people ...

Alps

DebbieDZ
  • By DebbieDZ · Posted February 20, 2014
  • Discussion in Rare and Genetic Diagnosis · 0 replies
  • Hello, our 6 yr old son has been diagnosed with ALPS since he was 4. We would like to connect with you if you are living with the same. Smiles, The Zia Family ...

Introducing Photos for Inspire

Walter
  • By Walter · New reply February 13, 2014
  • Journal · 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...

my 5 year old son linear sebaceous syndrome

chanelle6
  • By chanelle6 · New reply February 7, 2014
  • Journal · 2 replies
  • Hello all, i have a 5 year old son who has been displaying signs of a developmental delay since age 3, he would hideif guess came over to visit,he hid his entire birthday party, in school he displayed ...

Great article about NPC

NeetuMOD
  • By NeetuMOD · Posted December 25, 2013
  • Discussion in Rare and Genetic Diagnosis · 0 replies
  • If you haven't read this already, check out this great investigative article about NPC and the search for a cure http://projects.wsj.com/trials/?mg=inert -wsj?mod=djemalertNEWS#chapter=1 ...

Happy Holidays from The Inn!

NeetuMOD

Festival of Lights

NeetuMOD
  • By NeetuMOD · Posted December 24, 2013
  • Discussion in Navigating Bethesda and Washington DC · 0 replies
  • Happy Holidays everyone! If you are in town and looking for something to do, don't miss out on DC's annnual Festival of Lights. http://www.dctemplelights.lds.org/?gclid =CJqrjYPnyLsCFYQ7OgodDD0Aaw&CID=99112435 ...

Thank You, From Inspire

Walter
  • By Walter · New reply December 3, 2013
  • Journal · 108 replies
  • Hello everyone, As Thanksgiving approaches, all of us at Inspire would like to take a moment to thank you for being part of our community. While we wish no one had to deal with the serious health issues ...

Life, Love, and the Pursuit of a Pain-free Night

Khatn
  • By Khatn · New reply November 19, 2013
  • Journal · 61 replies
  • This past week has given me a load of rows to hoe and think about. One week ago, my darling (and she truly is) 2-y-o Maine Coon kitten (don't care if she's 2, she's still my little kitten) came to me ...

life is chance

Yosea
  • By Yosea · New reply November 15, 2013
  • Discussion in Pediatric Cancer Treatment at NIH · 1 reply
  • God never leaves his beloved race alone , so for you who have the disease , do not be afraid because God is always there beside you look deep in heaven,,, So don't fraid about anything ...

DOCK8 Primary Immunodeficiency Disease

Dock8momma
  • By Dock8momma · Posted November 5, 2013
  • Discussion in My First Visit to The Children's Inn at NIH · 0 replies
  • I am a mom of 6 children. Two which have the disease discovered in 2009 called DOCK8. My oldest died in 2011. The other is deteriorating at the age of 19. The best known way to deal with this disease ...

Fmf and disability

Amarisdyan
  • By Amarisdyan · Posted October 9, 2013
  • Discussion in Rare and Genetic Diagnosis · 0 replies
  • Hi my daughter has been diagnosed with fmf. Does any one get dla benefit for fmf. I'm in the uk ...

Sources sought for stories about federal goverment shutdown

John2
  • By John2 · Posted October 2, 2013
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 10/2/13 Dear members, Journalists from several national broadcast news outlets contacted us today seeking to interview patients and caregivers who are ...

New report: How good communication underpins positive patient outcomes

John2
  • By John2 · Posted September 25, 2013
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 9/25/13 Dear members, I'm writing to share with you a new report based on an online survey of more than 1,000 Inspire members affected by cancer. "The ...

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The Children's Inn at NIH Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by The Children's Inn at NIH, an Inspire trusted partner.

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This community, created in agreement with The Children's Inn at NIH, will not contain advertisements or announcements of clinical trials.