Family Fun Day

SWAN USA is planning our first Family Fun Day, scheduled for September 25th from 10:00 am to 4:00 pm. This years event will be held at the Grand Rapids Children's Museum in Grand Rapids Michigan. We will be planning following year events in different locations.

We have set up a giving group at Give Forward to help us raise funds to make this event a special one for the children and their families. If you would like to help out in any way use our contact information to reach us.

Collin Raye

Sending condolences to Collin Raye and his family. Months ago his song was released, "She's With Me" which was written about his granddaughter. Haley, who had a neurological disorder that was undiagnosed, passed away early in the month of April. The Official Haley Bell Memorial Fund has been set up for contributions, for more information contact Karen Willard karenwillard@comcast.net.  

Resources

Book Review - Every Patient Tells A Story,
Medical Mysteries and The Art of Diagnosis by Lisa Sanders

Children's Book - This is Gabriel Making Sense of School, is about children with Sensory Processing Disorder and to help them find success in school.

The Special Needs Alliance - a national non-profit organization committed to helping individuals with disabilities, their families, and the professionals who represent them.

HealthGrades- Reports and ratings to guide you to better care providers.

Vitals - Where doctors are examined. Find a doctor or rate a doctor.

In The News

• Nine-year-old Tiffany Searle from American Fork has a disease that has baffled doctors for years. read more...
   

• Boy's Seizures, Developmental Delays Baffle Doctors, Complicating Treatment; Cases When Illness Can't Be Diagnosed . read more...
   

• Undiagnosed and unsure about the future: Eli Adoberg's mystery condition. read more...

• The diagnosis of Levi was a syndrome so rare it is simply referred to as the unknown syndrome. read more...

• Kain has baffled doctors ever since he was born at 31 weeks on July 21, 1999 ­weighing just 3 lbs 3oz.. read more...

• She stopped walking, talking, sitting and she's not holding her head up. But every test (doctors) have done has been normal. read more...

• Seventeen-month-old Savannah suffers from frequent seizures, struggles to see and her tiny muscles are so weak that she is unable to even sit up unaided. read more...

Contact Us:

 

PBS To The Contrary

Watch the videos!

Part 1
DNA Sequencing: Children With Rare Diseases

Part 2
Decoding DNA: Helping Children With Rare Diseases

Part 3
DNA Sequencing: The Beery Family


 

 E-Support Group
Join in on the conversations at our e-support group. There are over 300 members who are part of the group. Recent discussions have been about therapy/service dogs, clinical diagnosis, difficult feelings and much more.


 

 Facebook Page
Join us on Facebook, where we share news story's and helpful resources.


 

The Experience of Uncertainty Study
Sponsored by
National Human Genome Research Institute at the National Institutes of Health

A study that seeks to learn more about how parents of children with an undiagnosed medical condition think and feel about their child's condition.