Support - Research - Education

Back to top

Resources

Peace, Love, Heal - A blog about living with CLOVES

The Shoe that Grows - The Shoe that grows expands five sizes and lasts for years

Billy Footwear - Fashion and Function forward shoes for everyone

Video about Croc Modification - Created by parents of a child with CLOVES

Croc shoe modification plan - From the Proteus Syndrome Foundation's website. Many people say this process works well

Complex Child E-Magazine - Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities

Providers who can assist with Air Travel - Private and commercial providers who may be able to get you/your child to a multidisciplinary Vascular Anomalies Center, for medical treatment.

Angel Flight, now called “Air Charity Network”: www.aircharitynetwork.org
Family’s home airport must be less than 1000 miles from Boston and child/adult must be able to fly on small aircrafts.

Miracle Flights: www.miracleflights.org . This organization uses volunteer pilots, corporate aircrafts AND commercial flights.

Northwest Airlines KidCares:
http://www.nwa.com/corpinfo/aircares/about/kidcares.sht
The Northwest Airlines KidCares medical travel program provides air travel to children age 18 and younger who are unable to receive treatment in their home area. The KidCares program is fueled by generous mileage donations of Northwest's WorldPerks members, which are then matched by Northwest. Availability of the program is based on that donated WorldPerks mileage, and consideration of each request is based on the following guidelines.

Mercy Medical Airlift: www.mercymedical.org They are associated with Angel Flight. Commercial flights.
Operation Lift Off: http://www.operationliftoff.com/Mission.html. Provide air transportation to specialized care and treatment centers.

List of multiple options: http://mercymedical.org/helpful-links/

In addition, if your child has Medicaid, some or all of their medical travel/expenses may be covered. Check with you/your child's Medicaid worker.

Angel Flight East - is a nonprofit organization that facilitates free air transportation to children and adults in need of medical treatment far from home. Volunteer pilots use their own aircraft and pay for all costs of the flight. AFE covers a 14 state territory from Virginia to Ohio to Maine and for destinations beyond that, we link up with other volunteer pilot organizations.

Companies that sell two different sizes of shoes - List of companies that provide two different shoe sizes

 

 

MEDICAL RESOURCES

The Emerging Genetic Mosaic of Lymphatic & Vascular Malformations
Children's Hospital Boston discusses four syndromes with somatic PIK3ca mutations

CLOVES Syndrome at Boston Children's Hospital 
Treatment and diagnostics at Boston Children's Hospital

Facilities/Physicians who treat Complex Vascular Anomaly Syndromes
List from National Organization of Vascular Anomalies (NOVA) of US providers

Children's Hospital Boston - Vascular Anomalies Center (VAC)
The Vascular Anomalies Center (VAC) at Children's Hospital Boston is a team of 25 physicians—representing 16 medical and surgical specialties—who are experts in the field of vascular anomalies

Cincinnatti Children's Hospital - Hemangioma and Vascular Malformation Clinic
Multidisciplinary treatment center for vascular anomalies

Questions to ask your Doctor
A comprehensive list of questions to ask your child's doctor/your doctor about CLOVES

Guidelines for Imaging Vascular Anomalies
Guidelines for MRI Sequences, MRI, Angiogram and Ultrasounds developed by Children's Hospital Boston

Descriptions of types of Vascular Anomalies
In depth look at capillary malformations, venous malformations, arterio-venous malformations (AVM), lymphatic malformations and mixed

What is a Mosaic Illness?
Image and description from the National Institutes of Health (NIH)

Spinal Cord Anatomy/Injury 
Description and images from US National Library of Medecine

Navigating the Ecosystem of Translational Science (NETS thru Genetic Alliance)
A map and guide developed by Genetic Alliance of the drug development process

Share this