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Resources to Help

Introductory image: Conference participants - father and daughter

AAMDSIF has compiled a broad range of helpful resources to assist caregivers as they support the bone marrow failure patients in their lives.

NOTE: This list is for informational and educational purposes only. It is not intended to provide medical or financial advice. AAMDSIF does not recommend or endorse any of these programs. It is your responsibility to check with each organization to learn which resources are currently available.

 

FINANCIAL RESOURCE

FINANCIAL ASSISTANCE AND SUPPORT – GENERAL

American Cancer Society
www.cancer.org
(800) 227 – 2345
The American Cancer Society has numerous support programs for patients and families including 30 Hope Lodges located throughout the U.S. that offer a free place to stay during treatment and the Road to Recovery Program which connects patients to volunteers who provides free rides to medical appointments.

The Assistance Fund
www.tafcares.org
855-308-0212
The Assistance Fund (TAF) has launched of a new financial assistance program for individuals living with Paroxysmal Nocturnal Hemoglobinuria (PNH). The fund helps qualifying PNH patients by providing financial assistance for their copayments, coinsurance, deductibles and other health-related expenses.

To learn more or determine eligibility for financial support, PNH patients should visit www.tafcares.org or call (855) 308-0212 to speak with a TAF patient advocate.

BMT InfoNet
www.bmtinfonet.org/patient-assistance-fund-request-form

(888) 597-7674

The BMT InfoNet Patient Assistant Fund (PAF) assists patients and caregivers with living expenses during treatment.

Children's Organ Transplant Association (COTA)
www.cota. org
(800) 366-2682
Provides fundraising assistance for children & young adults needing bone marrow transplants. Also advocates for marrow, organ and tissue donation.

First Hand Foundation
www.firsthandfoundation.org
(816) 201-1569
Nonprofit foundation established by Cerner Corporation. Assists families of children with health problems address financial aspects of their child's health care.

HelpHOPELive
www.helphopelive.org
(800) 642-8399
Provides small grants, information and support for fundraising and patient awareness.

Leukemia Research Foundation
https://allbloodcancers.org/patient-support/grants/
(888) 558-5385
Provides qualified MDS patients who live in Illinois with financial assistance. The program reimburses almost any treatment-related expense not covered by medical insurance.

The National Marrow Donor Program/Be the Match Foundation
www.marrow. org
(800) 627-7692 (General Information)
(888) 999-6743 (Office of Patient Advocacy)
Nonprofit organizations dedicated to creating an opportunity for all patients to receive bone marrow or umbilical cord blood transplant when needed.

Patient Advocate Foundation/ Equal Access to Health Care
www.patientadvocate.org
(800) 532-5274
Offers personal assistance to patients with MDS. Through a personal case manager, they may be able to help you deal with your insurance company, as well as health-related problems with your employer or creditors.

Social Security Disability Programs
www.ssa.gov/disability
(800) 772-1213
Largest of several Federal programs that provide assistance to people with disabilities. You can also speak with your hospital's social worker for additional information.

 

MEDICATION ASSISTANCE

Cancer Care
http://portal.cancercarecopay.org/Funds-Available/Diagnoses

(866) 552-6729

CancerCare® Co-Payment Assistance Foundation (CCAF) is a nonprofit organization dedicated to helping patients afford their co-payments for chemotherapy and targeted treatment drugs. Offers co-pay assistance for Myelodysplastic Syndromes (MDS), Acute Myeloid Leaukemia (AML), Acute Lymphoblastic Leukemia (ALL), Myeloproliferative Neoplasms (MPN) – Essential Thrombocythemia, Myelofibrosis, and Polycythemia Vera. Offers co-pay assistance for pediatric MDS and AML as well.

Children’s Leukemia Foundation of Michigan
www.leukemiamichigan.org 
(248) 530-3000
Offers financial and emotional support for Michigan residents with blood and bone marrow disorders.

Good Days
www.mygooddays.org
(877) 968-7233
Provides medication co-pay assistance for MDS patients with private insurance or Medicare Part-D plan. If CDF cannot help you, they will refer you to other resources for assistance.                              

HealthWell Foundation
www.healthwellfoundation.org

(800) 675-8416

The HealthWell Foundation provides financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies. They have a pediatric assistance fund regardless of disease and an Acute Myeloid Leukemia (AML) fund.

Leukemia and Lymphoma Society
http://www.lls.org/  
(800) 955-4572
Offers two programs to help pay for covered services. APatient Financial Aid program offers up to $150 per year to patients for approved drugs, blood and marrow transfusions, transportation costs to appointments and x-ray therapy. The Co-Pay Assistance Program can provide up to $5,000 to help patients with insurance, out-of-pocket costs associated with treatment for MDS or another eligible disease.

Julia’s Wings (pediatrics only)
http://www.juliaswings.org/
(860) 355-3653
The Julia’s Wings Foundation (JWF) is a 501(c)(3) non-profit organization with the mission of providing assistance to families of children with the life threatening hematological diseases; aplastic anemia, MDS and PNH.

Medicaid – Prescription Drug Program
https://www.medicaid.gov/medicaid/prescription-drugs/index.html

(877) 267-2323

Provides detailed information on Medicaid, including information on enrollment, new initiatives and prescription drugs. Also includes information on reimbursement and financial assistance.

Medicare – Prescription Drug Program
www.medicare.gov

(800) 633-4227

Provides information on public and private programs that offer discounted or free medication, programs that provide help with other health care costs and Medicare health plans that include prescription coverage.

Needy Meds
www.needymeds.com

(800) 503-6897

Nonprofit organization that helps people who cannot afford medicine or healthcare costs. Information is available anonymously and free.

National Organization of Rare Disorders (NORD) – Medication Assistance Program
https://rarediseases.org/for-patients-and-families/
(203) 744-0100 or (800) 999-6673 (voicemail only)
NORD works with pharmaceutical companies to ensure that vital medications are available to those in need. They currently offer a program to assist with premiums and co-pays for PNH patients.

Partnership for Prescription Assistance
www.pparx.org
(888) 477-2669
Single point of access to more than 275 public and private patient assistance programs, including more than 150 offered by pharmaceutical companies.

RXAssist – Volunteers in Health Care
www.rxassist.org
(877) 844-8442
Maintains a database of resources for low-income patients to receive free or low-cost medications. National nonprofit organization.

Together RX Access
www.togetherrxaccess.com 
(800) 444-4106
Provides a free card for discounts on more than 300 brand-name drugs and some generic drugs at participating pharmacies. There are income and other requirements, and you must be a legal resident of the U.S.

 

LODGING AND TRAVEL ASSISTANCE

Air Care Alliance – umbrella organization
www.aircareall.org 
(888) 260-9707
Links patients with numerous free flight programs.

Air Charity Network
www.aircharitynetwork.org 
(877) 621-7177
Offers free flights in the U.S. Volunteer pilots are available to fly patients in need to specialized health care facilities.

Angel Flight America – umbrella organization
www.angelflight.com 
(918) 749-8992
Provides a free flight for the patient and a support person for distances under 1,000 miles.

Fisher House Foundation

www.fisherhouse.org 
(888) 294-8560
Provides families with a place to stay at every major military and VA medical center. Cost per family ranges from free to $10 per night. Speak with the hospital's social worker for additional options.

Mercy Medical Angels
www.mercymedical.org 
(888) 675-1405
Referral service that connects patients to free flights.

Miracle Flights for Kids
www.miracleflights.org 
(800) 539-1711
Flies children who are struggling with serious cancers and debilitating diseases to specialized medical treatment centers across the U.S.

National Association of Hospital Hospitality Houses
https://www.hhnetwork.org/?option=com_mc&view=404
(800) 542-9730
Referral service for 150 nonprofit organizations that provide comfortable lodging for families supporting their loved ones during medical treatment. Cost for accommodations starts at $15 per night per family.

Ronald McDonald House
https://www.rmhc.org
(630) 623-7048
Provides families with housing while their children receive medical treatment. Families are asked to make a $5 - $20 donation per night, if possible.

 

PHARMACEUTICAL COMPANY PATIENT ASSISTANCE

Alexion OneSource Program
https://alexiononesource.com
(888) 765-4747
OneSource is a complimentary, personalized patient support program offered by Alexion and tailored to the specific needs of people living with PNH.

Amgen – Reimbursement Program
https://www.amgen.com/responsibility/our-approach-to-pricing-access-and-affordability/access-approaches-treatment-and-collaborations/access-to-medicine-and-patient-support-programs/access-to-medicine/reimbursement-and-financial-assistance-programs
(800) 272-9376
Amgen makes the drugs Aranesp, Neulasta, Neupogen, Nplate and Epogen. The program offers patient assistance with a variety of programs. The website also includes guides to insurance verification, patient assistance and billing and claims support.

ApellisAssist Patient Support Program
https://empaveli.com/apellisassist/
(866) 692-7527

Provides services and product resources including insurance support, education, training, as well as financial assistance for eligible patients.  Once enrolled in ApellisAssist, patients will have access to a dedicated Care Coordinator through a specialty pharmacy along with access to an Apellis Care Educator, who will provide self-infusion training and disease education.

Celgene - Patient Support Coordinator
www.celgenepsc.com
(800) 931-8691
Provides information about their products, including Revlimid and Vidaza. Patients can ask questions about insurance reimbursement and underinsured patients may be able to receive free medication.

Novartis - Patient Assistance Foundation
www.novartis.us/our-products/patient-assistance/patient-assistance-foundation-enrollment#ui-id-1=18
(888) 903-7277
Provides access to Exjade through a special distribution system. Other financial/claims assistance may be available.

Sanofi US Oncology - Patient Connection
www.leukine.com/patient-reimbursement
Sanofi makes drugs such as Leukine. Provides certain prescription medications at no cost to patients who meet eligibility requirements.

 

PATIENT FINANCIAL AID/PATIENT ADVOCACY

PNH Travel Grants
www.aamds.org/travelgrants
(800) 747-2820
The Aplastic Anemia and MDS International Foundation help ensure that all PNH patients can see a PNH specialist for the best course of treatment. With demonstrated financial need, it  may be able to provide financial aid up to $500 per eligible, U.S.-based PNH patient .

Bone Marrow Foundation (BMF)
www.bonemarrow.org
(800) 365-1336
Patient aid program provides coverage for many costs associated with bone marrow transplant.  Grants are limited to specific institutions, so speak to a hospital social worker or call BMF for more information.

First Hand Foundation
www.firsthandfoundation.org
(816) 201-1569
Nonprofit foundation established by Cerner Corporation. Assists families of children with health problems address financial aspects of their child's health care.

HelpHOPELive
www.helphopelive.org
(800) 642-8399
Provides small grants, information and support for fundraising and patient awareness.

Leukemia Research Foundation
https://allbloodcancers.org/
(888) 558-5385
Provides qualified MDS patients who live in Illinois with financial assistance. The program reimburses almost any treatment-related expense not covered by medical insurance.

Children's Organ Transplant Association (COTA)
www.cota.org
(800) 366-2682
Provides fundraising assistance for children & young adults needing bone marrow transplants. Also advocates for marrow, organ and tissue donation.

 

INSURANCE AND CO-PAY ASSISTANCE

Families USA Program Locator
http://familiesusa.org
Includes listings of health insurance assistance programs by state.  These programs handle many questions about Medicare, Medicaid and private insurance and may be able to  refer you to low-cost or free health care (which may include  prescription drug assistance).

Foundation for Health Coverage Education
https://coverageforall.org
(650) 762-1928
Exists to simplify health insurance eligibility information and help more people get coverage. Site includes eligibility information and links to applications for health coverage programs.

Georgetown University's Health Policy Institute
http://hpi.georgetown.edu
Publishes consumer guides for getting and keeping health insurance for every state. Also includes summaries of the guides and glossaries of terms.

Insure Kids Now
www.insurekidsnow.gov
(877) 543-7669
Government-run program provides uninsured children with health insurance. In most states, uninsured children under the age of 18 whose families earn up to $44,500 per year are eligible for free or low cost insurance. Programs vary by state.

Patient Services, Inc. (PSI)
https://www.patientservicesinc.org
(800) 366-7741
Offers help to patients with chronic myelogenous leukemia. If you have access to insurance through COBRA, a state-run High Risk Pool, or a private insurance policy, PSI may be able to help you pay your premiums. They also offer assistance covering out-of-pocket costs for medication, medical devices, transportation to treatment and other expenses not covered by insurance.

 

SCHOLARSHIPS

The Crystal Green/Blood Assurance Memorial Scholarship Program
www.bloodassurance. org

(800) 962-0628

Established scholarship fund for high school students offers twelve one-year scholarships of $1,500 each.

Scholarships for Disadvantaged Students
https://bhw.hrsa.gov/loansscholarships/schoolbasedloans

(800) 221-9393

Provides scholarships to full-time students from disadvantaged backgrounds enrolled in health professions and nursing programs. Contact student financial aid office at the school where you are, or intend to be, enrolled.

ScholarshipAmerica
www.scholarshipamerica.org

(800) 537-4180

Developed to help make postsecondary education possible for all students.

Federal Student Aid
https://studentaid.gov/

(800) 433-3243

Offered by the U.S. Department of Education to ensure that all eligible individuals benefit from federal financial assistance - grants, loans and work-study programs for education beyond high school.

Patient Advocate Foundation – Scholarships
http://www.patientadvocate.org/events.php?p=69

(800) 532-5274

Provides support to patients seeking to initiate or complete a course of study that has been interrupted or delayed by a diagnosis of cancer or other life­ threatening disease.

 

WISH ORGANIZATIONS FOR CHILDREN

Camp Simcha
www.campsimcha.org
(877) 242-4543
Provides free camp and travel to Camp Simcha. Preference is given to children with hematological disorders.

Children's Wish Foundation
www.childrenswish.org
(800) 323-WISH
Provides enrichment programs to terminally ill children and their families.

Dream Factory
http://dreamfactoryinc.org
(800) 456-7556
Grants dreams to children diagnosed with critical or chronic illnesses who are 3 through 18 years of age.

Make a Wish Foundation
www.wish.org
(800) 722-WISH
Makes wishes come true for terminally ill children.

Association of Hole in the Wall Camps
https://www.holeinthewallgang.org
(203) 562-1203
Provides free camp stay at Hole in the Wall Camps. Paul Newman founded this nonprofit year-round camping association in 1988.

 

OTHER SUPPORT RESOURCES

GENERAL RESOURCES

AAMDSIF Peer Support Network
The Peer Support Network consists of a national network of volunteers, including patients, caregivers and family members willing to listen and offer comfort and support. The Peer Support Connection can put you in touch with other parents who are dealing with issues similar to your own.  In addition, volunteers may share personal experiences, coping strategies, problem solving skills, and informational resources. Peer support sessions take place over the phone.

CaringBridge
Caring Bridge provides an online space where you can connect, share and receive support – a personalized "caring" social network, available 24/7 to everyone at no cost. Protected sites make it easy to post health updates during any type of health event. Family and friends visit the site to stay informed and leave supportive messages.

Lotsa Helping Hands
Lotsa Helping Hands connects people through the power of community — whether you need help or you want to provide help. You may be caring for a loved one who's sick, an aging parent, a child with special needs or a veteran. When people rally to help someone in their family or community, Lotsa Helping Hands makes it easier for each person to know what to do and when.

Marrowforums
Marrowforums is an online discussion group for patients, family, caregivers and friends dealing with bone marrow failure diseases. Extended family and professionals who work with these diseases are also welcome.

MPN Advocacy & Education International
MPN Advocacy & Education International provides resources, quality education programs, advocacy support and services to patients with myelofibrosis, essential thrombocythemia and polycythemia vera, caregivers, physicians and all those in the MPN community.  It is committed to assisting, directing and informing its constituents on pertinent issues that impact quality care, treatment accessibility, updates on current research and updates on clinical trials. Learn more about patient conference for those dealign with MPNs at www.mpnadvocacy.com/events/

National Heart, Lung, and Blood Institute
The National Heart, Lung and Blood Institute provides global leadership for research, training, and education programs to promote the prevention and treatment of heart, lung and blood diseases. The site provides reliable information on bone marrow failure diseases and their treatment.

National Institutes of Health
The National Institutes of Health (NIH) is the nation's leading medical research agency. Its work leads to important medical discoveries that improve people's health and saves lives. NIH scientists investigate ways to prevent disease, as well as discover the causes, treatments and even cures for common and rare diseases. You can search on this site for aplastic anemia, MDS or PNH and review current research.

National Library of Medicine
This is the world's largest medical library. Their website provides comprehensive information on various bone marrow failure diseases.

Patient Empowerment Network  

Patient Empowerment Network’s mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available.

The Social Security Administration Compassionate Allowances Initiative
Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. In 2012, Aplastic Anemia was added to this list. Compassionate Allowances lets Social Security target the most obviously disabled individuals for allowances based on objective medical information. Compassionate Allowances is not a separate program from the Social Security Disability Insurance or Supplemental Security Income programs.

ResearchMatch
Matches volunteer patients who meet necessary criteria with appropriate research studies.

 

AGING RESOURCES

National Institute on Aging
Aging in Place connects seniors, families, and caretakers with the information and professional support they need to make the best decision for their physical, emotional, and financial well being. Our resources and network of experts help ensure your home evolves to best accommodate your changing budget, mobility, and health.

 

PEDIATRIC RESOURCES

American Academy of Pediatrics

(800) 433-9016

This site provides general information on promoting health and well-being for children. You can also search for articles on specific bone marrow failure diseases.

The Bone Marrow Garden
With the help of Dr. David Margolis, Program Director of Children’s Hospital of Wisconsin’s Blood and Bone Marrow Transplant Program, AAMDSIF presents an explanation of bone marrow failure, the treatments, side effects and activity restrictions in The Bone Marrow Garden, a video and slide presentation created especially for children and adolescents.

girlshealth.gov

(800) 994-9662

This site is sponsored by the National Women's Health Information Center of the U.S. Department of Health and Human Services. It is written by and for young women in their teens. A section under "Illness and Disability" addresses many questions and concerns expressed in this age group about hospital life, school, friends, family and dating.

Learning Disabilities Association of America
(412) 341-1515
LDAA provides support to people with learning disabilities, their parents, teachers, and other professionals. An online course is available for parents describing how to get the services your child needs under the Individuals with Disabilities Education Act

The North American Pediatric Aplastic Anemia Consortium
The North American Pediatric Aplastic Anemia Consortium (NAPAAC) is a collaborative research effort that seeks to develop better therapies for children with aplastic anemia by combining the expertise and resources of the leading pediatric hematologists in North America.

Partnership for Parents
Partnership for Parents is a safety net for parents of children with serious illnesses.

Transitions - Changing Roles for Families
This check-list identifies key tasks that young adults should be able to do as they make the transition out of pediatric healthcare and how families should prepare for it. Is your family ready to support this transition? Checklists are in English and Spanish.

Transitions - Changing Roles for Adolescent Youth
This check-list identifies key tasks that young adults should be able to do as they make the transition out of pediatric healthcare. Is your child ready to transition? Checklists are in English and Spanish.

 

VETERAN RESOURCES

The Department of Veterans Affairs
The Department of Veterans Affairs (VA) offers a number of resources for caregivers and veterans, including VA's Caregiver Support Line: (855)-260-3274. In addition, the VA has created a Caregiver Tool Box to help you find tools that work for your veteran.

 

BONE MARROW TRANSPLANTATION RESOURCES

BMT InfoNet

(847) 433-3313

This site is dedicated exclusively to serving the needs of patients facing a bone marrow, blood stem cell or umbilical cord blood transplant. In addition to high-quality medical information in easy-to-understand language, BMT InfoNet offers patients and survivors emotional support. A volunteer network of over 200 transplant survivors is available to help newly diagnosed patients and their loved ones cope with the stress of a life-threatening diagnosis, and the prospect of a bone marrow, stem cell or cord blood transplant.

BMTsupport.org

(925) 314-0385

BMTSupport.org is an interactive non-profit organization designed to motivate, empower and enlighten people with an interest in bone marrow transplantation through peer support, education and awareness of this difficult but potentially lifesaving procedure. Their mission is to support those who suffer the effects of illness before, during and after transplant, to celebrate the miracles that bone marrow transplantation has given to those who are now well, and to offer encouragement those facing marrow transplantation.

Bone Marrow Foundation

(800) 365-1336

The mission of The Bone Marrow Foundation is to improve the quality of life for bone marrow and stem cell transplant patients and their families by providing financial aid, education and emotional support.

National Bone Marrow Transplant Link
nbmtLink is a non-profit organization specifically serving stem cell transplant patients, their caregivers and families, as well as health professionals. The mission of nbmtLink is to help the patient community and the health care community meet the many challenges of stem cell transplant by providing vital information and support services.

National Marrow Donor Program (also known as "Be The Match")

(800) 627-7692

The National Marrow Donor Program helps people who need a life-saving marrow or blood cell transplant.  They connect patients, doctors, donors and researchers to the resources they need to help more people live longer, healthier lives. To achieve this mission, they search the "Be The Match" National Bone Marrow Registry - the largest database of volunteer donors and cord blood units in the world. They support patients and their doctors throughout the transplant process and match patients with the best donor or cord blood unit using innovative science and technology.

Super Sam versus the Marrow Monsters: A Guide to Bone Marrow Transplant for Children and Their Families
A 20-minute animated film from the National Bone Marrow Donor Program (“Be the Match”) features Sam, a young boy making an epic movie production about his own transplant experience. Along the way, Super Sam meets many everyday heroes (patients, siblings, and health care staff) who talk about the hospital, their feelings, what a transplant means and what recovery is like.

 

END OF LIFE RESOURCES

AgingCare.com is a community of caregivers facing the challenge of caring for an elderly loved one. They offer tips about how to cope when you know your elderly parent is dying soon.

Aging with Dignity 

(888) 594-7437

National non-profit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. Their Five Wishes meets the legal requirements in 42 states and has helped literally millions of people plan for and receive the kind of care they want. Five Wishes is unique among all other advance directives and living wills because it is user-friendly and easy to complete.  Five Wishes is available in 27 languages and in Braille to address the needs of an ethnically and culturally diverse nation. Like the English version, translated versions of Five Wishes are written in easy-to-understand language. Each foreign language copy of Five Wishes carries a side-by-side English translation for medical providers and others who speak only English.

Children's Hospice International
(800) 4-2-CHILD
info@chionline.org
Children's Hospice International provides care for children from the time of their diagnosis with a life-threatening condition with hope for a cure, through bereavement if a cure is not attained.

Dying Well—The Final Stage of Survivorship is the National Coalition for Cancer Survivorship’s toolkit. Dying Well is an informative, supportive, and reassuring program designed to teach you more about your choices and resources and what to expect during this last stage of survival. 

End-of-Life: Helping with Comfort and Care hopes to make the unfamiliar territory of death slightly more comfortable for everyone involved. This publication is based on research, such as that supported by the National Institute on Aging, part of the National Institutes of Health. This research base is augmented with suggestions from practitioners with expertise in helping individuals and families through this difficult time.

End-of-Life Issues and Care from the American Psychological Association highlights the role of psychologists in helping the dying and their loved ones. They can assess mood, mental functioning and pain; treat depression, anxiety and other mental health problems; provide end-of-life counseling to the dying and their families; and advocate for good medical care.

End-of-Life Issues from the American College of Physicians provides a set of tools that can help patients and families live well with serious illness near the end of life. These educational materials can be used to facilitate conversations between physicians, patients, and their families.

Hospice Foundation of America is a trusted source of information on end of life, hospice care and grief. Throughout this site you will find information about living with advanced life-limiting illness, options for care, and helpful resources for caregivers.

International Association for Hospice & Palliative Care
(866) 374 2472
Promoting universal access to high-quality palliative care, integrated in a continuum of care with disease prevention and treatment, to assure that no patient or family caregiver suffers unnecessarily.

Last Days of Life provides information about managing symptoms, ethical issues in end-of-life decisions, and grief and loss. As part of the National Cancer Institute's (NCI's) comprehensive cancer information database this Physician Data Query (PDQ®) is written in easy-to-understand, nontechnical language. Last Days of Life is also available in Spanish.

National Hospice and Palliative Care Organization is a nonprofit that provides information on hospice care for professionals, caregivers, and families. Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well.
The NHPCO Helpline: (800) 658-8898
NHPCO's Multilingual HelpLine: (877) 658-8896

Palliative Care for Veterans
The Veterans Administration has joined forces with hospice organizations to better serve and meet the needs of its terminally ill veterans.

Pediatric My Wishes is a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill. Like Five WishesMy Wishes also helps begin conversations among children, parents, and caregivers. My Wishes is not a legal document.

Spirituality in Cancer Care is another PDQ® from the National Cancer Institute's (NCI's) comprehensive cancer information database. Many patients with cancer rely on spiritual or religious beliefs and practices to help them cope with their disease. This is called spiritual coping. Many caregivers also rely on spiritual coping. Each person may have different spiritual needs, depending on cultural and religious traditions.

Voicing My Choices: A Planning Guide for Adolescents and Young Adults (and Spanish language Expresar Mis Deseos) helps young people living with a serious illness to communicate their preferences to friends, family, and caregivers. Voicing My Choices, based on findings in the journal, Pediatrics, recognizes the standard advanced care planning documents don’t meet all the needs of younger patients. This study found that adolescents and young adults living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would like to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered.

 

GLOBAL RESOURCES

Europe/Global

  • Bone Marrow Donors Worldwide
    • Bone Marrow Donors Worldwide (BMDW) is the continuing effort to collect the HLA phenotypes of volunteer stem cell donors and cord blood units, and is responsible for the co-ordination of their worldwide distribution. Participants are 71 stem cell donor registries from 50 countries, and 48 cord blood banks from 32 countries.
  • Eurordis
    • EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 561 rare disease patient organizations  in 51 countries.
  • HematosLife--PNH-AA rare blood disease community
  • The MDS Alliance
  • National Marrow Donor Program: Be the Match 
    • Be The Match® connects patients with their donor match for a life-saving marrow or umbilical cord blood transplant.
  • Orphanet
    • A database that provides information in Spanish, English, German and other languages about more than 950 rare diseases and orphan drugs.
  • World Marrow Donor Association
    • The World Marrow Donor Association (WMDA) fosters international collaboration to facilitate the exchange of high quality haematopoietic stem cells for clinical transplantation worldwide and to promote the interests of donors.

Asia

  • South Asian Marrow Association of Recruiters (SAMAR)
    • Serves patients diagnosed with leukemia and other fatal blood disorders from the South Asian community (people from India, Afghanistan, Bangladesh, East Africa, Guyana, Nepal, Pakistan, Sri Lanka, West Indies) and other minority groups who are in search of Blood Stem Cell /Marrow donors.

Australia

Austria

Belgium

Canada

  • Aplastic Anemia & Myelodysplasia Association of Canada 
    • The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a leading funder of research into bone marrow failure diseases in Canada. This volunteer-run organization supports patients and caregivers across the country who are living with aplastic anemia, myelodysplastic syndrome (MDS ) and paroxysmal nocturnal hemoglobinuria (PNH).
  • Canadian Association of PNH Patients
    • The Canadian Association of PNH Patients is a not-for-profit Canadian organization formed in 2009. The mission of the organization is to connect Canadians affected by Paroxysmal Nocturnal Haemoglobinuria and advocate for the best possible care for patients and ensure they are equipped with the most current tools and information to help them live well with the condition.
  • Canadian Blood and Marrow Transplant Group
    • Multi-disciplinary organization providing leadership and promoting excellence in patient care, research and education in the fields of blood and marrow transplantation (BMT).
  • Canadian Organization for Rare Disorders
    • CORD is Canada's national network for organizations representing all those with rare disorders.

Croatia

Denmark

France

Germany

Greece

India

Italy

Netherlands

New Zealand

Poland

Portugal

Scandanavia

Slovenia

Spain

Sweden

United Kingdom

  • Wellchild Families
    • Provide essential practical and emotional support for seriously ill children, young people and those who care for them across the UK to ensure they receive the best possible quality of care.
  • The Aplastic Anemia Trust
    • Dedicated to supporting sufferers of aplastic anaemia and allied disorders.
  • MDS UK Patient Support Group
  • PNH Support
    • PNH patients in England, Wales and Northern Ireland who have formed a community in order to support each other and speak with one voice, providing relevant and reliable information.

 

For more information, contact our Helpline at help@aamds.org or (800) 747-2820 x 2.

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