Resources

Aplastic Anemia

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

MDS Foundation   https://www.mds-foundation.org

Julia's Wings  www.juliaswings.org

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Education

US Department of Education:  https://www2.ed.gov/about/contacts/state/index.html
Find state contacts for General and Special Education Services

National Center for Learning Disabilities:  http://www.ncld.org/

Understood.org:  https://www.understood.org/en
Mission:  Our goal is to help the millions of parents whose children, ages 3–20, are struggling with learning and attention issues. We want to empower them to understand their children’s issues and relate to their experiences. With this knowledge, parents can make effective choices that propel their children from simply coping to truly thriving.

Wrightslaw:  http://www.wrightslaw.com/
Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

Association for the Education of Children with Medical Needs (AECMN) http://aecmn.wildapricot.org/

Association for Pediatric Hematology Oncology Education Specialists (APHOES) http://www.aphoes.wildapricot.org/

 


Eyes

Blocked Tear Ducts

Coat's Plus -  http://ghr.nlm.nih.gov/condition/coats-plus-syndrome


Gastrointestinal

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


Genetics

For any questions about genetics or gene testing please check out this website:  http://www.genesinlife.org/

   Trait Profile

Trait profiles are short descriptions and explanations about a wide range of genetic conditions, written in family-friendly language by genetic counselors and physicians. You may view all profiles, profiles by first letter, or search them by name.

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 Info & Centers:

 

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

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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
 

Patient Assistance Programs

NORD's RARE CARE Program offers many forms of support, including travel assistance to clinical trials. 

National Patient Travel Center – Provides information about all forms of charitable, long-distance, medically-related transportation. Visit their webpage to request assistance. 

Air Charity Network - Provides access to member organizations that offer free air transportation to specialized health care facilities or distant destinations needed during family, community, or national crisis.  Call 877-621-7177 to be automatically routed to a member organization in your region.

Angel Flight East - Provides free air transportation to qualified patients and their families by arranging flights to distant medical facilities, delivering supplies to disaster areas, and reuniting families during desperate times. Call 215-358-1900 to learn more.

LifeLine Pilots – Facilitates free air transportation provided by volunteer pilots for passengers with medical and humanitarian needs. View the Request a Flight page on their website or call 800-822-7972 for assistance.

Mercy Medical Angels – Provides help with travel for specialized medical evaluation, diagnosis, or treatment. Call 888-675-1405 for help arranging transportation.

Miracle Flights – Provides free domestic or international travel to U.S. facilities for medical treatment, second opinions, and follow-up for patients in need. Call 800-359-1711 to find out if you qualify for assistance.

 Angel Flight for Veterans – Helps veterans or active duty military who need to travel for specialized medical evaluation, diagnosis, treatment, or rehabilitation. Patients needing help can call 800-296-1217.

Children’s Flight of Hope - Provides free air transportation to and from medical facilities in the eastern United States for seriously ill and injured children. To request a flight, submit an online flight request or call 919-466-8593 for assistance.

Corporate Angel Network - Arranges free travel on corporate jets for cancer patients, bone marrow donors, and bone marrow recipients. Call 914-328-1313 within three weeks of your appointment at a cancer treatment center.

Healthcare Hospitality Network - A nationwide professional association of nearly 200 nonprofit organizations that provide lodging and support services to patients, families, and their loved ones who are receiving medical treatment far from home. To find lodging in a specific area, use their online search form or call 800-542-9730.

Joe’s House - A nonprofit organization providing cancer patients and their families an online list of nationwide discounted lodging near hospitals and treatment centers. To find lodging, call 877-563-7468 or use their online directory

Ronald McDonald House Charities – Provides families with housing and home-cooked meals, at little or no cost, close to their hospitalized child. To request a stay, contact the social services department at the hospital where your child will receive treatment.

The Children’s Inn at NIH – A nonprofit residence dedicated to serving the families of children involved in pediatric research at the NIH Clinical Center in Bethesda, MD. First time reservations must be made by your medical team. Call 800-644-4660 for information.

Edmond J. Safra Family Lodge at NIH - Offers a home-like place of respite for families and loved ones of adult patients who are receiving care at the NIH Clinical Center in Bethesda, MD. Guests must be referred by the NIH Institute or Center in charge of the patient’s research study. Call 301-496-6500 for information about referrals and use of the facility.


Financial Support

 

The Julia’s Wings Foundation - Julia's Wings Foundation is a non-profit organization, certified 501(c)(3), that provides financial assistance to families of children with the life threatening hematological diseases, aplastic anemia, MDS and PNH. The fund has a budget of $75,000 per calendar year for the purpose of providing  financial support to these families to cover costs of medicines not covered by insurance, travel, lodging, and other living expenses for qualified participants. If you are a parent or guardian of a child with aplastic anemia and have been forced to incur significant financial burdens in the process of getting your child the medical treatment they require, you may be eligible to receive financial assistance from the Julia’s Wings Foundation. We offer short-term financial assistance to families of children with aplastic anemia, particularly those in the midst of treatment or prolonged hospitalizations. See above  link for more information and click here for the application process.


                

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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

 

Self Management Plan print out:

 
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.
 

Support

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