Health Information

Adrenal Insufficency

Solu-Cortef Notice:   New NDC number 0009001103
How to administer Solu-cortef
Managing adrenal insufficiency
Preventable Deaths: Magic Foundation

Advocacy/Public Policy

Children's Hospital Boston Family Advocacy Day: Information on the yearly Family Advocacy Day in D.C. (from Boston) Politics, policy and parenting blog and website
With All All Might - Elevating Child Health Policy
National Association of Children's Hospitals: Public Policy
Find your Senator
Find your Representative
Political Party Circuit - When/where are your leaders partying during the year (track lobby $)

Diabetes Insipidus

Got DI? Facebook group: (open group)
Endocrinology Journal - Gene Therapy for CDI
List of DDAVP Manufacturers (not actually the purpose of the document but if you are looking for alternate manufacturers of your DDAVP/desmopressin product this might come in handy)

Drug Shortage Information

American Society of Health Systems Pharmacists: Drug Shortages Resource Center
FDA Drug Shortage List: DDAVP in alpha order
Drug Shortages in the News: ABC News, PBS NewshourMSNBC
St. Jude Children’s Chief Pharmaceutical Officer Testifies Before Congress on Drug Shortage Crisis


PubMed Health: Hypothyroidism
Mayo Clinic: Hypothyroidism


It's a Preemie Thing: blog dedicated to preemies
March of Dimes - March for Babies

Septo-Optic Dysplasia

One Small Voice Foundation: Optic nerve hypoplasia and hydrocephalus
Focus Families: an old website dedicated to ONH/SOD
National Institute of Neurological Disorders and Stroke: Septo-Optic Dysplasia information page
Genetics Home Reference: Septo-optic dysplasia
Research paper from One Small Voice Foundation: Optic nerve hypoplasia in North America: a re-appraisal of perinatal risk factors
Parents of ONH/SOD Children (Magic Foundation) Facebook group (private group)

Other Sites of Interest

Parents of Panhypopit Children (Magic Foundation) Facebook group (private group)
Magic Foundation: site devoted to growth hormone and related disorders
Rare Disease Day: awareness raising event, "Rare but strong together"

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