CLOVES Syndrome Community
Supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome.
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Exceptional Parent Magazine
A magazine for parents of children with special needs.
Hereditary Hemorrhagic Telangiectasia (HHT) Foundation
HHT provides advocacy and support. Includes factual information, research updates, helpful links, and a newsletter.
Infantile Hemangioma
A disease awareness web site created by Pierre Fabre Pharmaceuticals Inc.
Lymphangiomatosis & Gorham Disease Alliance (LGDA)
Promotes research that will identify effective treatments and ultimately a cure for these diseases. Provides support to patients and their families; education and hope to those affected by these rare lymphatic malformations. **Website also has information on the International LGDA Registry for Lymphatic Malformations**
Lymphatic Education & Research Network (LE&RN)
LE&RN fosters and supports research regarding understanding of the lymphatic system. Website has information on clinical trials and research updates.
Medicaid - Transportation Assistance
Assistance available to patients who are enrolled in Medicaid coverage, including non-emergency medical transportation or mileage reimbursement for outpatient appointments (local and long distance) as well as lodging and meal assistance if travelling from out of town for hospitalizations and out-patient visits.
National Organization for Rare Disorders (NORD)
An educational link for organizations and individuals concerned with a rare disorder. They monitor legislation, research diseases, award grants and network individuals.
National Organization for Vascular Anomalies (NOVA)
Hemangioma and vascular malformation advocacy and support. Includes physician list, related support services, patient networking, blogs, and transportation services.
NeedyMeds
Information on medicine and healthcare assistance programs.