patient

1. Disease Overview References

2. Financial Assistance

3. Prescription Assistance Programs

4. Housing

5. Transportation

6. Family & Caregiver Resources

7. General Cancer Resources (see **)

8. Support Groups

9. Healthcare Advocacy Consultants

**Note: Based on our current understanding of the disease, CD is not believed to be a form of cancer, but further research is needed to confirm this. MCD is deadly, behaves most like an aggressive lymphoma, and "cancer" is probably the best disease category to include CD at this time, so we have provided "cancer" support resources below.


 

1. DISEASE OVERVIEW REFERENCES

“HHV-8-negative or idiopathic Multicentric Castleman disease.” From Blood, this article is a good general overview of the latest concepts and information related to pathology, diagnosis, treatment, and pathogenesis of HHV-8-negative MCD.

"Recent advances in Kaposi sarcoma herpesvirus-associated (HHV-8-associated) multicentric Castleman disease." From Current Opinions in Oncology, this article is a good overview of HHV-8-associated MCD.

"The Management of Unicentric and Multicentric Castleman’s Disease: A Report of 16 Cases and a Review of the Literature." Though this article is relatively old, the management and treatment of UCD is still the same: resect or treat patients with unresectable UCD masses with MCD therapies. 

Castleman Center of Reference - France
The National French Reference Center for Castleman Disease serves as a resource website for patients located in France - learn more about Castleman disease, find a specialist, or register for ACCELERATE.

2. FINANCIAL ASSISTANCE

Disclaimer: The CDCN serves as a collaborative research and support network. We are happy to connect patients and loved ones with expert Castleman physicians; however, patients must have private insurance as the CDCN cannot provide financial assistance related to healthcare coverage.

Affordable Care Act
Allows patients to determine if they are eligible for enrollment in Medicaid or CHIP.

Eligibility.com
Helps patients understand and/or determine their eligibility for more than 30 benefit programs including Medicare, Medicaid, and Social Security.

Centers for Medicare and Medicaid Services
Provides information about government sponsored healthcare programs.

Cancer Financial Assistance Coalition
A comprehensive directory of financial assistance programs for cancer patients.

Cancer Scholarships
This page contains information about scholarships for cancer patients, cancer survivors, children of a cancer patient or survivor, students who lost a parent to cancer, and students pursuing careers in cancer treatment. This award winning site offers a wealth of comprehensive and informative financial aid advice and tools.

JustGiving & GoFundMe
Both JustGiving and GoFundMe allow family and friends to raise money to cover the costs associated with medical care and treatment.

Lazarex Cancer Foundation
Provide assistance with cost for clinical trial participation and help navigating clinical trial options for end stage cancer patients.

National Cancer Institute Financial Assistance Resource Directory
A comprehensive directory of financial assistance programs for cancer patients.

NIH: Global Genes 2-Part Webinar
Global Genes hosts a 2-part webinar on how to deal with different insurance challenges faced by patients with rare diseases. 

Patient Access Network
Co-payment assistance for approved cancer medications for patients who qualify based on income.

Patient Advocate Foundation 
Offers education, legal couseling, and referrals concerning managed care, insurance, financial issues, job discrimination and debt crisis matters. Toll-free: 1-800-532-5274

The Tyler Robinson Foundation
Dedicated to providing financial assistance to families with children battling cancer.

3. PRESCRIPTION ASSISTANCE PROGRAMS

Co-pay Relief
Patient Advocate Foundation’s Co-Pay Relief (CPR) Program provides direct co-payment assistance for pharmaceutical products to insured Americans who financially and medically qualify.

NeedyMeds
NeedyMeds helps people who cannot afford medicine or health care costs. The information at NeedyMeds can be obtained anonymously and is free of charge. NeedyMeds is an information source similar to the Yellow Pages; it does not supply medications or financial assistance, but helps people find assistance programs and other available resources.

Partnership for Prescription Assistance
This is a service offered by the Pharmaceutical Research and Manufacturers of America to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. Their website offers a single point of access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies. To access the Partnership for Prescription Assistance by phone, you can call toll-free, 1-888-4PPA-NOW (1-888-477-2669).

Rx Assist
RxAssist offers a comprehensive database of patient assistance programs for people who cannot afford to buy their medicine.

WEP Clinical
WEP Clinical is a clinical services company which sets up and manages Expanded Access Programs (EAPs) on behalf of sponsors. These programs, also known as Compassionate Use or Named Patient Programs, distribute potentially life-saving treatments to where there is an unmet medical need. Patients who have no viable treatment options available to them, who cannot receive an investigational drug through a clinical trial, or who live in a country where an approved drug is not commercially available, can potentially gain access to medication through one of these programs. Please reach out to Yasmin Khera at ykhera@wepclinical.com OR 919-454-6467. 

4. HOUSING

Hope Lodge
Hope Lodge is a temporary housing program supported by the American Cancer Society, that provides free, temporary housing facilities for cancer patients who are undergoing treatment.

Hospice Foundation of America
Provides programs and materials on hospice care, caregiving, grief and end of life. They also provide a hospice locator service, and links to other organizations and resources. Toll-free: 1-800-854-3402.

Joes House
Joes House is a guide to locating temporary housing for cancer patients and their families who must travel away from home for medical treatment. Their site lists hundreds of cancer treatment centers and nearby lodging facilities.

National Association of Hospitality Houses, Inc
NAHHH lists facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies. Each facility assures that a homelike environment is provided to persons who must travel to be with a patient or to receive necessary outpatient care.

National Hospice and Palliative Care Organization
Provides information on hospice care, local hospice programs, state specific advance directives, and locating a local health care provider. Through their program, Caring Connections, they also provide education and materials on palliative and end of life issues, as well as links to other organizations and resources. Toll-free: 1-800-658-8898

Ronald McDonald House Charities
Ronald McDonald Houses provide a “home away from home” for families of seriously ill children receiving treatment at nearby hospitals. Ronald McDonald Houses are temporary residences near the medical facility, where family members can sleep, eat, relax, and find support from other families in similar situations.

5. TRANSPORTATION

Air Care Alliance
This is a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service. Their website has an extensive central listing of free air transportation services that provide transport for patients, and sometimes family members, needing to get to a treatment center.

Angel Flight East
Angel Flight East (AFE) is a 501(C)(3) nonprofit organization dedicated to serving the community by facilitating free air transportation for children and adults with medical conditions who need to get to treatment far from home.

Angel Flight Mid-Atlantic
Angel Flight Mid-Atlantic provides air transport to specialized medical facilities for evaluation, diagnosis, treatment and rehabilitation. Angel Flight Mid-Atlantic provides medical air transport for patients departing from: District of Columbia, Delaware, Kentucky, Maryland, Michigan, Ohio, Pennsylvania, Virginia and West Virginia.

Corporate Angel Network
This organization arranging free flights to treatment centers, using the empty seats on corporate aircraft. Eligibility is not based on financial need and patients may travel as often as necessary.

Miracle Flights
Miracle Flights helps seriously ill children obtain proper medical care by providing flights to treatment centers.

National Patient Air Transportation Hotline
This hotline provides information about all forms of charitable, long-distance medical air transportation and provides referrals to appropriate sources of help available in the national charitable medical air transportation network.

Southwest Airlines Medical Transportation Grant Program
Southwest Airlines  provides complimentary, roundtrip tickets to nonprofit hospitals and medical transportation organizations. Southwest allows participating nonprofit hospitals and medical transportation nonprofit organizations the freedom to determine how to distribute the tickets to patients and/or caregivers. See a list of participating organizations on their website. 

6. FAMILY AND CAREGIVER RESOURCES

CareGiver
CareGiver provides family and caregivers of cancer patients resources and support to help them through difficult times. Caregivers can share notes, recipes, stories, support and chat through this online community group.

CaringBridge
CaringBridge.org provides free websites for cancer patients to help keep friends and family informed during their battle. Visitors can check in on the patient and caregivers and post messages of support.

Family Reach
Family Reach works to alleviate the financial burden of cancer on families by working with 300 hospitals and cancer centers nationwide to provide immediate financial assistance, educaiton, and navigation to qualifying families.

National Family Caregivers Association
This group provides education and information services, support and validation for caregivers, public awareness and advocacy devoted to improving the quality of life of caregivers. Services for family caregivers include a quarterly newsletter, peer support network, educational materials, national resource referrals, and a bereavement program.

The Wellness Community
Provides free psychological and emotional support to cancer patients and their families. Toll-free: 1-888-793-9355

7. GENERAL CANCER RESOURCES (SEE NOTE ABOUT CD & CANCER)

American Cancer Society
ACS is a national organization that offers a variety of support services and educational materials to patients and families coping with cancer.

The B+ Foundation
The B+ Foundation - kids helping kids - aims to provide financial and emotional support to families of children with cancer nationwide.

CancerCare
A non-profit organisation that provides free professional assistance to anyone affected by cancer. Resources for patients, family/friends, and healthcare professionals include online support groups, social assistance, financial aid and other general cancer support, all available free of charge.

Common Cancer Myths and Misconceptions
The National Cancer Institute has published this list of the latest science-based information about common cancer myths and misconceptions.

Lance Armstrong Foundation
The LAF offers numerous educational materials, outreach programs, and support services to cancer patients and survivors. The LIVESTRONG™ SurvivorCare partnership between CancerCare and the Lance Armstrong Foundation provides financial assistance to cancer survivors. LAF also conducts advocacy and fundraising events nationwide and provides an opportunity for cancer patients to get involved in the fight against cancer.

National Coalition for Cancer Survivorship
The NCCS is the oldest survivor-led cancer advocacy organization in the country. They focus heavily on policy issues but also provide numerous resources for cancer patients. They feature the “Cancer Survival Toolbox”, which is a free, audio program that teaches skills that can help people with cancer meet the challenges of their illness. The Toolbox includes a Basic Skills set that covers six important topics: communicating, finding information, making decisions, solving problems, negotiating and standing up for your rights.

Patient Advocate Foundation
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

8. SUPPORT GROUPS

RareConnect: Castleman disease patient and loved one community
A safe and easy to use platform that has created an international community for Castleman disease survivors and their loved ones can develop online communities and conversations across continents and languages, which is translated into 5 different languages.

Facebook: International Castleman Disease Organization
A Facebook community for Castleman disease survivors and their loved ones in English.

Facebook: Castleman Disease Collaborative Network
A Facebook community for members of the CDCN, including Castleman disease patients, their loved ones, and supporters of the CDCN in English. 

Cancer Support Community
Online and in-person cancer support groups. Offers resources for coping with the cost of care and assistance in finding financial aid.

Friends Health Connection
Friends’ Health Connection (FHC) offers an array of educational programs on topics including the well-being of mind, body and spirit. They offer an award-winning worldwide support network that links individuals with the same health problems on a customized, one-to-one basis for mutual support. They also connect caregivers to one another.

Gilda’s Club
Gilda’s Club provides places where men, women, and children with cancer and their families and friends join with others to build social and emotional support as a supplement to medical care. Free of charge and non-profit, Gilda’s Clubs offer support and networking groups, lectures, workshops and social events in a nonresidential, home-like setting.

The Wellness Community
The Wellness Community is an international non-profit organization dedicated to providing free support, education and hope to people with cancer and their loved ones. Through participation in professionally-led support groups, educational workshops, nutrition and exercise programs, and mind/body classes, people affected by cancer learn vital skills that enable them to regain control, reduce isolation and restore hope regardless of the stage of their disease. Today, there are 24 Wellness Communities around the United States plus 56 satellite and off-site programs, and two centers abroad. 

 

9. HEALTHCARE ADVOCACY CONSULTANTS

AdvoConnection
Access to patient resources and advocates who can provide a wide range of assistance to patients and caregivers such as managing health challenges, insurance billing, legal aid, and transportation to treatment centers.

American Association for Cancer Research
The AACR’s Survivor and Patient Advocacy Program is dedicated to bridging cancer survivors and patient advocacy with scientific communities, helping advocates and scientists work together to advance aims in cancer research.

National Association of Healthcare Advocacy Consultants
The National Association of Healthcare Advocacy Consultants (NAHAC) is a professional organization supporting the field of healthcare advocacy. Membership is open to anyone with the interest of promoting professional standards, best practices and healthcare advocacy in public policy and legistlation.

Nation-Wide Appeals Resources:
www.HealthCare.gov/can-i-appeal-a-marketplace-decision or call: 1-800-318-2596
Healthcare.gov provides information about appeals regarding insurance. You may contact a representative who can act on your behalf throughout the appeals process.

Patient Advocate Foundation 
Nation-wide step-by-step process to understanding and applying for appeals. PAF offers clear, step-by-step brochures as well as sample appeal letters for patients and physicians.

State-Wide Appeals Resources:
www.insurance.pa.gov
PA-specific appeals process guidance.

https://localhelp.healthcare.gov
Useful for identifying local support with appeals.

The Castleman Disease Collaborative Network is not responsible for the content of external websites.