npcfund.org
Resources For Rare Disease Families | Niemann-Pick Children's Fund, Inc
http://www.npcfund.org/niemann-pick-type-c/resources
Niemann-Pick Children's Fund, Inc. A Rare Lysosomal Storage Disease. News & Events. Niemann Pick Type A and B. Patient Bill of Rights. Tips For Insurance Coverage. Families who are affected by Niemann-Pick Type C Disease. Brisan and Parker Stults - Living with the "Childhood Alzheimer's". Http:/ www.BriParDun.com. Brisan and Parker Stults live with Niemann-Pick Type C Disease also known as the childhood Alzheimer's. This devastating disease robs children of their childhood and memories! CollabRx is a bio...
cdkl5.com
Resources: International Foundation for CDKL5 Research
http://www.cdkl5.com/For-Families/Resources.aspx
Dedicated to finding a cure for children affected by CDKL5. Research Grants and Updates. Roadmap to a Cure. CDKL5 International Registry Database. CDKL5 Centers Of Excellence. The beginnings of CDKL5. 2nd Annual Toasting Tanner. IPS Disease Modeling and Drug Development in CDKL5. Dr Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has . Learn More. Caley J. Brown Foundation. L'Albero di Greta ONLUS - Associazione Italiana CDKL5. NIH Office of Rare Diseases.
rarediseaseday.org
Rare Disease Day ® 2016 - Article
http://www.rarediseaseday.org/article/rare-disease-day-2009
What is Rare Disease Day? What is a Rare Disease? Raise and join hands! What is Rare Disease Day? What is a Rare Disease? Overview of past Rare Disease Days. Raise and join hands! Sign up for updates. Fill in the form below. To sign up to the latest Rare Disease Day news! Tick to receive news from EURORDIS, organiser of Rare Disease Day. Thank you for signing up! You are almost finished. To complete the subscription process,. Please click the link in the email we just sent you! Rare Disease Day 2009.
raredisorders.wordpress.com
Rare Disorders | Learn About Them-You Could be the One in a Million Diagnosed With One | Page 2
https://raredisorders.wordpress.com/page/2
Learn About Them-You Could be the One in a Million Diagnosed With One. Hundreds of rare disorders are recognized across the globe. In the United States, disorders are considered rare if they have 200,000 or less diagnoses (within the US). The National Organization for Rare Disorders. Comments : 6 Comments. Next Entries ». Anorexia and Body Image. Be Happy, People. Cambodian Children's Health. Child Immunization in the USA. Don't Stop Believing. Emergency Preparedness for Students. Maternity Health in Utah.
cydanco.com
Rare Disease Patient Foundations & Advocacy Groups | Cydan
http://www.cydanco.com/whom-we-serve/foundations-and-advocacy-groups
Sign Up For Updates. News & Events. Focus on Rare Diseases. Accelerating Science To Therapy. Foundations and Advocacy Groups. Sign Up For Updates. Patients, Families and Organizations. Patients, families and advocacy groups know their disease better than anyone. Foundations and Advocacy Groups. Promote your patient advocacy event. Patients, families and advocacy groups know their disease better than anyone. Cydan values patient groups and the critical role they play in developing orphan drugs. 700 Techno...
childrensangelflight.org
Children's Angel Flight - Health Charity Links
http://www.childrensangelflight.org/other-resource-info/health-charity-links
A charitable patient travel agency. A non-profit 501(c)(3) charity. Case Management Resource Guide. Children’s Organ Transplant Association. International RRP ISA Center. MedExplorer Health/Medical Internet Search Engine. National Institutes of Health – Office of Rare Diseases. National Organization of Rare Disorders (NORD). Thyroid Cancer Survivor’s Association. Children's Angel Flight Services. Silent Auction Helps Children Access Medical Treatment. Read more ». Site Management by Web Marketing Firm.
cystaran.org
Cystinosis Resources
http://www.cystaran.org/hcp_resources.php
For US Residents Only. How Does CYSTARAN Work? Talk to Your Doctor. How Does Cystinosis Affect Eyes? Symptoms of Corneal Cystine Crystals. Clinical Studies With CYSTARAN. Additional information about cystinosis can be found at the following Web sites:. National Organization for Rare Disorders (NORD). Office of Rare Diseases Research (ORDR). For information about CYSTARAN, patient assistance, or to place an order, please call: 1‑877‑534‑9627. CYSTARAN contains benzalkonium chloride, which may be absorbed ...
mommydinosaur.blogspot.com
Mommy Dinosaur: December 2010
http://mommydinosaur.blogspot.com/2010_12_01_archive.html
Evolving as a parent in a world of special needs. Friday, December 31, 2010. And have you tasted vitamins with iron? J has and they are "yukky". I have a cupboard full of vitamins we'll never use to prove how yukky they taste. So I bought these. Not your typical health food, but look at this. And what kid wouldn't love the look of these little swirly balls of sweetness? On to Plan B. More on that later. Thursday, December 30, 2010. I hate dinner time! And bright blue cupcakes! Drum roll, please). This bl...
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