Info Links

Aplastic Anemia

The Aplastic Anemia & MDS International Foundation     www.aamds.org

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Eyes

Blocked Tear Ducts


Gastrointestinal

The Gastrointestinal Manifestations of Telomere-Mediated Disease  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3602337/


Genetic Couneling

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Dyskeratosis Congenita

Synonyms: Hoyeraal Hreidarsson Syndrome, Revesz Syndrome, Zinsser-Cole-Engman Syndrome

 


Pulmonary Fibrosis Resources:

Info Guide on PF in seven languages:  http://www.pulmonaryfibrosis.org/patienthandbook
 
​Pulmonary Fibrosis Foundation:  http://www.pulmonaryfibrosis.org/MedicalCenters
 
Local and online Support Groups for PF:  http://www.pulmonaryfibrosis.org/supportgroups
 
Coalition for Pulmonary Fibrosis:  http://www.coalitionforpf.org/
 
Dr. David Lederer’s, (Columbia, NY Presbyterian) blog:  www.pfdoc.com
 

Bone Marrow/ Stem Cell Transplant Centers:

Dana-Farber/Boston Children’s Cancer and Blood Disorders Center

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 RARE Toolkits provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients.

Global Genes™  is one of the leading rare disease patient advocacy organizations in the world. They build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease. Global Genes™  and their leaders are committed to ensuring that our programs support their worldwide mission of awareness and outreach, education, innovation and technology and research, and collaborative partnerships.

 


Misc

 
Compassionate Friends—a support group for bereaved parents
 
How to talk to your friend or loved one if they have lost a child–one parent’s advice.  Click here.
 
Self Management Plan print out.
 
Bone Marrow Testing–Be the Match will send you a free cheek swab kit which you can do at home and then you will be on the national registry.  There is no charge for this but they do ask for a donation.
 
 
YouTube Video about Bone Marrow Transplant for Children
(this is in two parts so there are two links.  
Super Sam part 1
Super Sam part 2
 
Click here for a printable pdf to take to your doctor – a self management plan for you to discuss with your medical care provider and then to keep in a safe place.
 
For any questions about genetics or gene testing please check out this website:  http://www.genesinlife.org/
 
If you are a caregiver and need support please go to this website:  http://www.caregiver.org/caregiver/jsp/home.jsp
 
Being a college student with a chronic disease is stressful to say the least.  Click here or go to http://www.webmd.com/balance/managing-chronic-disease-at-college  to find some helpful information on how to deal with managing that stress.  Some more important sites for college students living with chronic disease are:
 
 
 
HealthWell Foundation - When helath insurance is not enough
 
Applying for Disablity