Support Links for Parents and Patients

This collection of links has been created to provide a starting point for researching resources related to a variety of diagnoses, and the types of support that patients and their families may need. Each link provided here has a short description of the organization, their mission, and a summary of the types of support that are available from that organization. Please feel free to contact us to help build this list of links if you know of a particularly useful resource that you don't see here.

Sections:
General Financial Support Aplastic Anemia & MDS Autism Spectrum Disorders
Brain Tumor Bone Marrow Transplant Cancer Support
General Educational Resources Heart Surgery Hydrocephalus
Leukemia and Lymphoma Multiple Sclerosis Organ Transplant
Turner Syndrome Undiagnosed Diseases

General Financial Support Links
(Regardless of Diagnosis)

The UnitedHealthcare Children's Foundation

http://www.uhccf.org/
Support Types Offered: Financial
The UnitedHealthcare Children's Foundation is a non-profit 501(c)(3) organization funded by contributions from UnitedHealth Group, UnitedHealthcare and its employees, as well as the generosity of individuals and corporations.

First Hand Foundation

http://www.firsthandfoundation.org/
Support Types Offered: Financial
The First Hand Foundation is a nonprofit, 501(c)(3) organization founded by the Cerner Corporation in 1995 to assist individual children with health-related needs when insurance and other financial resources have been exhausted.

NetWish

http://www.netwish.org/
Support Types Offered: Financial
Net Wish removes the red tape of traditional non-profit organizations and uses the power of the Internet to provide direct and immediate assistance to families and individuals who desperately require a modest helping hand.  Their specific focus is how the aid will benefit children, older adults and other vulnerable members of the community.  Request for wishes are reviewed and applicants who have a request accepted, may be contacted directly. 

[Back to top]

Autism Spectrum Disorders

Autism Resource Center of South Florida
http://www.autismresourcecenterofsouthflorida.com
Support Types Offered: Educational, Emotional
The South Florida Autism website is dedicated to providing valuable information and useful products for parents, families, schools, teachers, service providers and children and adults with Autism Spectrum Disorders.

Aplastic Anemia & MDS

Aplastic Anemia & MDS International Foundation, Inc.

http://www.aamds.org/
Support Types Offered: Educational, Emotional
The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is an independent nonprofit organization whose mission is to support patients, families, and caregivers coping with Aplastic Anemia (AA), Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases. The Foundation provides educational materials, medical information, and access to peer support via a global network of volunteers who offer hope to those struggling with bone marrow failure diseases; builds awareness and knowledge of bone marrow failure diseases among medical and healthcare professionals and the general public; and raises public and private support for research to improve patient treatments, restore patients to health, and ultimately, to find cures for bone marrow failure diseases.

[Back to top]

Brain Tumor

American Brain Tumor Association

http://www.abta.org/
Support Types Offered: Education, Emotional, Practical, Financial
The American Brain Tumor Association (ABTA) is a not-for-profit, independent organization. Not affiliated with any one institution, they serve individuals globally and award funds to researchers throughout the United States and Canada. The American Brain Tumor Association exists to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families.

Brain Tumor Society

http://www.tbts.org/
Support Types Offered: Emotional, Educational, Financial
The Brain Tumor Society exists to find a cure for brain tumors and strive to improve the quality of life of brain tumor patients, survivors and their families by providing access to psychosocial support, information and resources. 

Brain Tumor Foundation for Children

http://www.braintumorkids.org/
Support Types Offered: Emotional, Financial
The mission of the Brain Tumor Foundation for Children is to provide emotional and informational support to families of children with brain tumors; to provide public education and awareness of the disease; to raise funds to support research for a cure; and to raise funds for the improvement in the treatment and the quality of life of the victims of pediatric brain tumor disease.

Children’s Brain Tumor Foundation

http://www.cbtf.org/
Support Types Offered: Educational, Emotional, Practical
Children’s Brain Tumor Foundation’s mission is to improve the treatment, quality of life and the long-term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors. 

The Healing Exchange Brain Trust

http://www.braintrust.org/
Support Types Offered: Educational, Emotional
The mission of the BRAIN TRUST is to create a healing exchange of information and support among People affected by neurological disorders including patient-survivors, families, caregivers, health professionals and researchers. Their goal is to provide and improve online communication resources. Their current online support groups cover a range of brain tumor types and other special interests. 

National Brain Tumor Foundation

http://www.braintumor.org/
Support Types Offered: Emotional, Educational
NBTF is a national non-profit health organization dedicated to providing information and support for brain tumor patients, family members, and healthcare professionals, while supporting innovative research into better treatment options and a cure for brain tumors.

This web site was created by brain tumor patients, family members, friends, doctors and nurses to achieve three primary objectives, to provide objective information regarding treatment options and community resources that will allow patients and family members to make decisions that best meet their own needs and values; provide a wide range of opportunities to connect with patients, caregivers, family members and healthcare providers to support each other through meaningful dialogue, either over the Internet, in person, or by telephone; and provide hope to patients, family members and friends.

Pediatric Brain Tumor Foundation

www.pbtfus.org
Support Types Offered: Educational, Emotional
The Pediatric Brain Tumor Foundation (PBTF) seeks to find the cause of and cure for childhood brain tumors by supporting medical research, increase public awareness about the severity and prevalence of childhood brain tumors, aid in the early detection and treatment of childhood brain tumors, support a national database on all primary brain tumors, and provide educational and emotional support for children and families affected by this life-threatening disease.

We Can – Pediatric Brain Tumor Network

http://www.wecan.cc/
Support Types Offered: Emotional, Educational, Practical
We Can is a parent-initiated pediatric brain tumor network that serves greater Los Angeles, Bakersfield, Sacramento and the San Francisco Bay area.  We Can offers information and emotional support to families with children who have brain tumors.  We Can provides opportunities for these families to meet, share their stories and equip each other to manage the treatment and recovery of their children. 

[Back to top]

Bone Marrow Transplantation

BMT InfoNet

http://www.bmtinfonet.org/
Support Types Offered: Educational, Emotional
dedicated exclusively to serving the needs of persons 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

http://www.bmtsupport.org/
Support Types Offered: Educational, Emotional
BMTSupport.org is an interactive non-profit 501(c)(3) organization which seeks to motivate, empower and enlighten people with an interest in bone marrow transplantation through peer support, education and awareness of this difficult but potentially life saving procedure. Their mission is to uphold those who suffer the effects of illness before, during and after transplant, to celebrate the miracles that BMT has given in the lives of those of us who are now well, and to offer encouragement and caring honesty to individuals and families facing marrow transplantation.

BMT-Talk list

http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=BMT-TALK&A=1
Support Types Offered: Educational, Emotional
Internet Support Group for BMT recipients, their friends and family from the Association of Cancer Online Resources.

Bone Marrow Foundation

http://www.bonemarrow.org/
Support Types Offered: Financial, Educational, Emotional
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.

The Marrow Foundation

http://www.themarrowfoundation.org/
Support Types Offered: Financial
The Marrow Foundation is a 501(c)(3) charitable non-profit organization, and focuses on the urgent need to improve the understanding of unrelated donor transplantation. The Foundation’s goals are to increase the size and diversity of the National Registry of unrelated marrow donors, assist patients with financial need in the process of searching the Registry for a marrow match, and sponsor research to improve the understanding and outcome of unrelated marrow transplantation on a worldwide basis.

National Bone Marrow Transplant Link

http://www.nbmtlink.org/
Support Types Offered: Educational, Emotional
The nbmtLink is a non-profit organization specifically serving stem cell transplant (SCT) patients, their caregivers, families, and health professionals. The mission of the nbmtLink is to help patients, as well as their caregivers, families and the health care community meet the many challenges of stem cell transplant by providing vital information and support services.

National Marrow Donor Program

http://www.marrow.org/
Support Types Offered: Educational
The National Marrow Donor Program (NMDP) helps people who need a life-saving marrow or blood cell transplant.  They connect patients, doctors, donors and researchers to resources they need to help more people live longer, healthier lives.  To achieve their mission, they search the Registry -- the largest listing of volunteer donors and cord blood units in the world, 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.

[Back to top]

Cancer Support Links

Association of Cancer Online Resources

http://www.acor.org/
Support Types Offered: Educational, Practical
The Association of Cancer Online Resources, Inc. (ACOR) is a 501(c)(3) non-profit organization. ACOR aims to provide information and support to cancer patients and those who care for them through the creation and maintenance of cancer-related Internet mailing lists and Web-based resources, provide our subscribers with access to varied and credible information sources through Internet resource development and partnership with trusted content providers, and improve communication between patients and health care professionals through advocacy in a variety of public forums, including the media and professional journals.

CancerCare

http://www.cancercare.org/
Support Types Offered: Financial, Emotional, Practical
CancerCare is a national nonprofit organization that provides free, professional support services to anyone affected by cancer:  people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs – including counseling, education, financial assistance and practical help – are provided by trained oncology social workers and are completely free of charge.

Cancer Recovery Foundation International

http://www.cancerrecovery.org/
Support Types Offered: Financial, Emotional
Cancer Recovery Foundation is a 501(c)(3) publicly supported, non-profit cancer resource, counseling and support organization. The Cancer Recovery Foundation's mission is to help all people prevent and survive cancer. 

Children's Cancer Center

http://www.childrenscancercenter.org/
Support Types Offered: Emotional, Educational, Financial
The Children's Cancer Center, Inc. is a non-profit 501(c)(3) organization which supports children with cancer or chronic blood disorder, and is limited to those families being treated in the Tampa Bay area.  The Children's Cancer Center is dedicated to providing children who have cancer or chronic blood disorders and their families with the emotional, financial and educational support necessary to cope with their life-threatening illnesses.

Foundation for Children With Cancer

http://www.childrenwithcancer.org/
Support Types Offered: Financial
The Foundation for Children with Cancer (FCC) is a non-profit organization that focuses on providing support for children throughout their cancer treatment. The Foundation for Children with Cancer's mission is to ease the financial burdens that many families face while pursuing quality healthcare for a child who has cancer.

National Cancer Institute

http://www.cancer.gov/
Support Types Offered: Educational
The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH), and is the Federal Government's principal agency for cancer research and training.

The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.

The NCI also maintains an excellent list of support resources and links, as well as a database of national organizations that provide support to people with cancer and their families.

National Children’s Cancer Society

http://www.thenccs.org
Support Types Offered: Financial, Emotional
The National Children's Cancer Society's Mission is to improve the quality of life for children with cancer and their families by providing financial and in-kind assistance, advocacy, support services and education.

[Back to top]

General Educational Resources  

Brave Kids

http://www.bravekids.org/
Support Types Offered: Financial, Educational, and Emotional
Bravekids.org helps children with disabilities, chronic, life threatening illnesses and special needs by providing thousands of resources & medical information on childhood conditions, plus message boards to connect children and parents to others sharing similar challenges.

[Back to top]


Heart Surgery

The Gift of Life Program

http://www.rotarygiftoflife-fl.org/
Support Types Offered: Financial
The Rotary International Gift of Life Program's primary purpose is to help needy children who require corrective heart surgery secure another lease on life through the miracle of open-heart surgery in a Gift of Life Participating Hospital in the U.S.A.

[Back to top]

Hydrocephalus

Hydrocephalus Association

http://www.hydroassoc.org/
Support Types Offered: Emotional, Educational, Practical
The mission of the Hydrocephalus Association is to provide support, education and advocacy for individuals, families and professionals.

HUGS of Florida, Inc. 

www.gothydro.org
Support Types Offered: Emotional, Practical
HUGS of Florida, Inc. was formed to connect, support, educate and advocate with individuals and families who are dealing with Hydrocephalus and to collaborate with the professionals who treat them.
[Back to top]

Leukemia and Lymphoma Links

The Leukemia & Lymphoma Society

http://www.lls.org/
Support Types Offered: Financial, Emotional, Education
The Leukemia & Lymphoma Society is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The Society's mission is to cure leukemia, lymphoma, Hodgkin's disease and myeloma; and to improve the quality of life of patients and their families.

Childhood Leukemia Foundation

http://www.clf4kids.org/
Support Types Offered: Emotional, Education
The Childhood Leukemia Foundation (CLF) is a national non-profit organization that offers a wide range of services at no charge to children living with cancer and their families. Its goal is to make sure children battling cancer know they are not alone.

Lymphoma Research Foundation

http://www.lymphoma.org/
Support Types Offered: Education
The Lymphoma Research Foundation (LRF) is the nation's largest lymphoma-focused voluntary health organization devoted exclusively to funding lymphoma research and providing patients and health care professionals with critical information on the disease. LRF's mission is to eradicate lymphoma and serve those touched by this disease.

[Back to top]

Multiple Sclerosis Links

Multiple Sclerosis Association of America

http://www.msaa.com/
Support Types: Emotional, Educational
MSAA’s mission is to enrich the quality of life for everyone affected by multiple sclerosis.

Multiple Sclerosis Foundation

http://www.msfocus.org/
Support Types: Emotional, Educational
The primary mission of the Multiple Sclerosis Foundation is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

National Multiple Sclerosis Society

http://www.nationalmssociety.org/ (National Site)
flc.nationalmssociety.org (Mid-Florida Chapter)
Support Types Offered: Emotional, Education
The Leukemia & Lymphoma Society is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The Society's mission is to cure leukemia, lymphoma, Hodgkin's disease and myeloma; and to improve the quality of life of patients and their families.

[Back to top]


Organ Transplant

Children's Organ Transplant Association (COTA)

http://www.cota.org/
Support Types Offered: Financial, Emotional
COTA is a nonprofit organization that assists patients age 21 and younger who need lifesaving organ, bone marrow, cord blood or stem cell transplants due to genetic disease.

[Back to top]

Turner Syndrome

Turner Syndrome Society

http://www.turnersyndrome.org/
Support Types Offered: Educational, Emotional, Practical
The members of this society have offered a wealth of support for over 20 years by understanding that every person’s needs are unique as Turner Syndrome affects each girl and woman in a different way. Education is their foremost goal, and whether you are a member of the society or a guest, you can access the latest Turner Syndrome Clinical Guidelines, attend National Conferences, get support from parents and adult women that “have been where you are," and access local chapter and support group information, plus many other resources.

[Back to top]

Undiagnosed Diseases

NIH Undiagnosed Diseases

http://rarediseases.info.nih.gov/
Support Types Offered: Educational, Emotional
Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:

  • To provide answers to patients with mysterious conditions that have long eluded diagnosis
  • To advance medical knowledge about rare and common diseases

The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center. Many medical specialties will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research.

[Back to top]