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Rare diseases and disorders

• Other publications and websites (29)
• Other organizations (32)

Other publications and websites

1. All About Hantaviruses (More information on this publication)

   http://www.cdc.gov/ncidod/diseases/hanta/hps/noframes/printgenlsection.htm

2. Dystonias Fact Sheet (More information on this publication)

   http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm

3. Ebola Virus Hemorrhagic Fever (More information on this publication)

   http://www.cdc.gov/ncidod/dvrd/spb/mnpages/dispages/ebola.htm

4. Genetics Home Reference (More information on this publication)

   http://ghr.nlm.nih.gov/

5. Goodpasture’s Syndrome (More information on this publication)

   http://kidney.niddk.nih.gov/kudiseases/pubs/goodpasture/index.htm

6. Hydrocephalus Fact Sheet (More information on this publication)

   http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydrocephalus.htm

7. Ménétrier's Disease (More information on this publication)

   http://digestive.niddk.nih.gov/ddiseases/pubs/menetrier/index.htm

8. Myoclonus Fact Sheet (More information on this publication)

   http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm

9. NINDS Arachnoid Cysts Information Page (More information on this publication)

   http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm

10. NINDS Dystonias Information Page (More information on this publication)

    http://www.ninds.nih.gov/disorders/dystonias/dystonias.htm

11. Patient Facts: Learn More about Legionnaires' disease (More information on this publication)

    http://www.cdc.gov/legionella/patient_facts.htm

12. Progeria (More information on this publication)

    http://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=59&key=P#P

13. Questions and Answers About: Lichen Sclerosis (More information on this publication)

    http://www.niams.nih.gov/Health_Info/Lichen_Sclerosus/default.asp

14. Rare Diseases Clinical Research Network (More information on this publication)

    http://www.nih.gov/about/researchresultsforthepublic/RareDiseasesCRN.pdf

15. Rare Diseases Terms (More information on this publication)

    http://rarediseases.info.nih.gov/RareDiseaseList.aspx

16. Tuberous Sclerosis (More information on this publication)

    http://www.nlm.nih.gov/medlineplus/ency/article/000787.htm

17. Tuberous Sclerosis Fact Sheet (More information on this publication)

    http://www.ninds.nih.gov/disorders/tuberous_sclerosis/detail_tuberous_sclerosis.htm...

18. About Tuberous Sclerosis Complex (Copyright © Tuberous Sclerosis Alliance) (More information on this publication)

    http://www.tsalliance.org/pages.aspx?content=2

19. Facts About Rare Muscular Dystrophies (Copyright © Muscular Dystrophy Association) (More information on this publication)

    http://www.mdausa.org/publications/fa-rareMD.html

20. Genetic and Rare Conditions Site (Copyright © University of Kansas Medical Center) (More information on this publication)

    http://www.kumc.edu/gec/support/

21. Lynch Syndrome (Copyright © Mayo Clinic) (More information on this publication)

    http://www.mayoclinic.com/health/lynch-syndrome/DS00669

22. Marfan Syndrome (Copyright © Arthritis Foundation) (More information on this publication)

    http://www.arthritis.org/disease-center.php?disease_id=14

23. Myositis (Copyright © Arthritis Foundation) (More information on this publication)

    http://www.arthritis.org/disease-center.php?disease_id=15&df=effects

24. NCI/PDQ® Health professionals: Pheochromocytoma (Copyright © Trustees of the University of Pennsylvania) (More information on this publication)

    http://www.oncolink.org/types/article.cfm?c=4&s=6&ss=48&id=9229

25. NCI/PDQ® Patients: Pheochromocytoma (Copyright © Trustees of the University of Pennsylvania) (More information on this publication)

    http://www.oncolink.org/types/article.cfm?c=4&s=6&ss=48&id=9082

26. NORD’s Patient Assistance Programs (Copyright © National Organization for Rare Disorders) (More information on this publication)

    http://www.rarediseases.org/industry/patient-programs

27. To Breastfeed or Not: PKU, Galactosemia, Other Rare Disorders and Possible Misdiagnosis (Copyright © La Leche League International) (More information on this publication)

    http://www.llli.org/llleaderweb/LV/LVAugSep98p78.html

28. Tuberous Sclerosis (Copyright © American Academy of Family Physicians) (More information on this publication)

    http://familydoctor.org/online/famdocen/home/children/parents/special/birth/496.html...

29. Turner Syndrome (Copyright © Human Growth Foundation) (More information on this publication)

    http://www.hgfound.org/pub_turner.html

Other organizations

1. Centro de Información sobre Enfermedades Genéticas y Raras (More information on this organization)
2. ClinicalTrials.gov (More information on this organization)
3. National Human Genome Research Institute (More information on this organization)
4. Office of Rare Diseases Research, OD, NIH, HHS (More information on this organization)
5. Acid Maltase Deficiency Association (More information on this organization)
6. Amyloidosis Foundation (More information on this organization)
7. Centro de Información sobre Enfermedades Genéticas y Raras, NIH (More information on this organization)
8. Coalition for Pulmonary Fibrosis (More information on this organization)
9. Dysautonomia Foundation, Inc. (More information on this organization)
10. Dysautonomia Treatment and Evaluation Center (More information on this organization)
11. Genetic Alliance, Inc. (More information on this organization)
12. Genetics Education Center, University of Kansas Medical Center (More information on this organization)
13. Guillain-Barré Syndrome Foundation International (More information on this organization)
14. Joubert Syndrome & Related Disorders Foundation (More information on this organization)
15. Lowe Syndrome Association, Inc. (More information on this organization)
16. MUMS National Parent-to-Parent Network, Mothers United for Moral Support, Inc. (More information on this organization)
17. National Fragile X Foundation (More information on this organization)
18. National Organization for Rare Disorders (More information on this organization)
19. Prader-Willi Syndrome Association (USA) (More information on this organization)
20. Progeria Research Foundation (More information on this organization)
21. Rare Diseases Clinical Research Network (More information on this organization)
22. Reflex Sympathetic Dystrophy Syndrome Association of America (More information on this organization)
23. Rubinstein-Taybi Syndrome (More information on this organization)
24. Schwachman Diamond America (More information on this organization)
25. Sotos Syndrome Support Association (More information on this organization)
26. Stickler Involved People (More information on this organization)
27. Support Organization for Trisomy 18, 13 and Related Disorders (More information on this organization)
28. The Magic Foundation (More information on this organization)
29. Trigeminal Neuralgia Association (More information on this organization)
30. Tuberous Sclerosis Alliance (More information on this organization)
31. Williams Syndrome Association, Inc. (More information on this organization)
32. Xeroderma Pigmentosum Society, Inc. (More information on this organization)

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