- Félagið
- Réttindi
- Vefverslun
- Styrkja félagið
- Fyrirspurnir
- Viðburðir - þátttaka
- Greiningar innan félags
Erlend félög /Foreign associations
Einstök börn eru í reglulegu samstarfi við erlend stuðningsfélög. Þetta samstarf hefur nýst einstaklega vel fyrir Einstök börn, ekki síst í öflun upplýsinga um sjaldgæfa sjúkdóma og sjaldgæf heilkenni. Upplýsingar um félagslega og fjárhagslega stöðu fjölskyldna í öðrum þjóðríkjum er öllum þjóðríkjunum mikilvæg.
Einstök börn eiga í samstarfi við eftirfarandi erlend stuðningsfélög og félagasamtök:
- Ataxia Telangiectasia
- Chronic Granolomatus disease
- Diamond Blackfan Anemia
- Hyper IgE
- ITP
- Velio-cardio-facial syndrome/Di George syndrome
- Autosomal resessive polycystic kidney disease
- Cystinosis
- Joubert Syndrome
- Polycystic kidney disease
- Lupus SLE
- Nephrotic syndrome
- Cystic fibrosis
- Autoimmune Hepatitis
- Bilary Atresia (Gallvega atresia)
- Eosinophilic esophagitis
- Hirschsprungs disease
- Gastro-oesophageal reflux disease (without oestophagitis) nærist ekki
- Short bowel syndrome
- Beckwith-wiederman syndrome
- Congenital adrenal hyperplasia eða Adrenogenital
- Hypoparathyriodism
- Nesidioblastiosis/Hyperinsulinsinus/Hypoglycemia
- Noonan-heilkenni
- Panhypopituitarism
- Prader-Willi syndrome
- Turner Syndrome
- Angelman Syndrome
- Ataxia cerebellae
- Batten Disease
- CMT / Charcot Marie Tooth
- Dravet syndrome
- Duchenne Muscular Dystrophy
- Dandy Walker syndrome
- Krabbe
- MS, Multiple Sclerosis
- NBIA (Neurodegeneration with Brain Iron Accumulation) Type 1
- NBIA (Neurodegeneration with Brain Iron Accumulation) Type 2A
- Neurofibromatosis (NF1)
- Rett Syndrome
- SMA
- Spina bifada
- Tuberous Sclerosis (TSC)
- http://cfcsyndrome.org/
- NORD's Rare Disease Database:
- NIH's Genetic and Rare Diseases Information Center (GARD):
- NORD's Physician Guides: