CLOVES Syndrome Community was developed with the understanding that when parents and loved ones are informed, empowered, and connected with others facing similar challenges, they will be better equipped to support their child's medical, emotional, and physical needs. Our mission is to support, educate, empower and improve the lives of those affected by CLOVES Syndrome. Our vision is an improved quality of life for people with CLOVES Syndrome. More about this group

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 ...

CLOVES and seizures

brit18
  • By brit18 · New reply March 11, 2014
  • Discussion in Newly diagnosed · 1 reply
  • Hello! My nephew was recently diagnosed with CLOVES. He is 3 and his symptoms seem to be increasing at a rapid rate. Within the last week we have noticed that he has been having "seizure like activity ...

Registration open for CLOVES Family Conference 2014

KPDavis
  • By KPDavis · Posted March 3, 2014
  • Discussion in Family Conference · 0 replies
  • Please join us for the 3rd CLOVES Family Conference scheduled on Saturday June 21st at Boston Children's Hospital. You won't want to miss it! http://bit.ly/1i2SU9E Among those attending with us this weekend ...

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 ...

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 ...

CLOVES Syndrome fundraising bracelet

KPDavis
  • By KPDavis · Posted January 21, 2014
  • Discussion in Awareness and volunteer opportunities · 0 replies
  • Check out our latest e-newsletter here! Info about our fundraising bracelet, Family Conference and our private support group. http://eepurl.com/MxreH ...

3rd CLOVES Family Conference

KPDavis
  • By KPDavis · Posted January 21, 2014
  • Discussion in Family Conference · 0 replies
  • The 3rd Family Conference is planned for Saturday June 21st at Boston Children's Hospital. Details and registration form available in the next few months! Please make sure and sign up for our mailing ...

New infographic: Inspire Rare Disease Health Communities at a Glance

John2
  • By John2 · Posted January 9, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 1/9//13 Dear members, I am writing to share with you a new infographic that Inspire published yesterday: Inspire Rare Disease Health Communities at ...

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 ...

Welcome to new families!

KPDavis
  • By KPDavis · New reply November 29, 2013
  • Discussion in Introductions · 5 replies
  • Please introduce yourself here ...

Opportunity to spread Awareness

KPDavis
  • By KPDavis · Posted October 23, 2013
  • Discussion in Awareness and volunteer opportunities · 0 replies
  • From Adrienne Blankenship at CLOVES Syndrome Foundation I received a message from a production company asking about my thoughts regarding an Emaleigh CLOVES story. The production company drafted a proposal ...

Volunteers Needed for a special project!

KPDavis
  • By KPDavis · Posted October 16, 2013
  • Discussion in Awareness and volunteer opportunities · 0 replies
  • Thanks to some very talented and dedicated volunteers, we are in the final phases of creating our CLOVES book for kids! This will be a resource for kids and families to learn more about what to expect ...

Fall Newsletter Info

KPDavis
  • By KPDavis · Posted October 16, 2013
  • Discussion in Family Conference · 0 replies
  • Planning for the 3rd CLOVES Family Conference has begun with potential dates in the early summer of 2014. Check out this link (http://clovessyndrome.org/page.cfm?page id=46) if you'd like to learn more ...

Welcome New Members!

KPDavis
  • By KPDavis · New reply August 11, 2013
  • Discussion in Introductions · 19 replies
  • Please introduce yourselves here ...

Five million

Brian
  • By Brian · New reply August 5, 2013
  • Journal · 261 replies
  • Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

A new Inspire report in collaboration with Stanford Medical School

Brian
  • By Brian · New reply July 22, 2013
  • Journal · 116 replies
  • As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...

Scholarship for people with CLOVES

KPDavis
  • By KPDavis · Posted April 28, 2013
  • Discussion in Resources for kids and families · 0 replies
  • Just a reminder about the CLOVES Family Scholarship program http://www.clovessyndrome.org/page.cfm?p ageid=49 This is a program to help people living with CLOVES offset some of the long term financial ...

New Research Opportunity at National Institutes of Health

KPDavis
  • By KPDavis · Posted April 23, 2013
  • Discussion in CLOVES research · 0 replies
  • Dear Friends and Families with CLOVES Syndrome: CLOVES Syndrome Community is pleased to announce that the National Institutes of Health/NIH (the organization that studied and discovered the genetic mutation ...

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About this community

The CLOVES Syndrome Community connects those affected by CLOVES syndrome for support, education, and inspiration. This community is sponsored by CLOVES Syndrome Community, an Inspire trusted partner.