Additional Resources

The following resources offer useful information about scleroderma, its symptoms and related issues. Organizational listings and links to other Web sites found on our site are provided as a service for our visitors. Listings and links do not constitute endorsement by the Scleroderma Research Foundation and the Foundation is not responsible for their content.

Jump to topic: Comprehensive Care Centers and Other Research Links, Scleroderma-Related Associations and Foundations, Other Links, Disability Benefits and Financial Assistance, Insurance, Patient Advocacy

 

Governmental Agencies and Patient Registries

National Institute of Arthritis & Musculoskeletal & Skin Diseases (NIAMS) an institute of the National Institutes of Health (NIH)

NIAMS supports research into the causes, treatment and prevention of arthritis and musculoskeletal and skin diseases, the training of scientists to carry out this research, and the dissemination of information on research programs in these diseases.

Office of Communications and Public Liaison
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health
Bldg. 31, Room 4C02
31 Center Dr. - MSC 2350
Bethesda, MD 20892-2350
Phone: 301-496-8190
Phone: 877-226-4267
Web: http://www.nih.gov/niams

 

The Office of Rare Diseases Research (ORDR)

The ORDR Web site aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.

Office of Rare Diseases Research
National Institutes of Health
6100 Executive Boulevard
Room 3B01, MSC 7518
Bethesda, Maryland 20892-7518
Phone: 301-402-4336
Fax: 301-480-9655
Email: ordr@od.nih.gov
Web: http://rarediseases.info.nih.gov/Default.aspx

 

Scleroderma Family Registry & DNA Repository

A national registry established by the National Institutes of Health to identify genes that influence susceptibility to scleroderma. Scleroderma patients and their families are encouraged to participate in the registry and provide DNA samples as a resource to scientists studying genes associated with scleroderma.

Coordinator of the Scleroderma Family Registry
University of Texas Health Science Center at Houston
6431 Fannin Street
MSB 5.270
Houston, TX 77030
Phone: 800-736-6864
Web: http://www.uth.tmc.edu/scleroderma_reg/

 

Morphea Registry and DNA Repository

Dermatologists at UT Southwestern are establishing a national registry for morphea patients and their relatives in order to gather the large number of patients necessary for genetic studies.

The purpose of this study is to create a national registry of people with morphea in order to answer the questions associated with morphea (clinical prognosis, cause and disease predictors). A large database of information from patients and their family members will help researchers discover what causes the disease, how to prevent it and establish more effective treatments.

UT Southwestern has been gathering patient information since summer 2007. For further details and any questions, please contact Memoree Lee at the Morphea Registry office:

Phone: 214-645-8973
Fax: 214-645-8972
Email: morphearegistry@utousthwestern.edu
Web: http://www.utsouthwestern.edu/utsw/cda/dept25717/files/384413.html

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Comprehensive Care Centers and Other Research Links

Johns Hopkins Scleroderma Center

The Johns Hopkins Scleroderma Center is one of the largest scleroderma clinics in the country. The center specializes in the management of systemic sclerosis, Raynaud's phenomenon and related disorders. In addition to patient care, the center is involved in both basic and clinical research projects funded in part by the Scleroderma Research Foundation.

5510 Hopkins Bayview Circle
Baltimore, MD 21224
Phone: 410-550-2629
Web: http://scleroderma.jhmi.edu/

 

Scleroderma Clinical Trials Consortium

The Scleroderma Clinical Trials Consortium (SCTC) is a charitable non-profit organization dedicated to finding better treatment for scleroderma. Member institutions of the SCTC conduct clinical treatment trials of new (and sometimes old) medications that appear promising for the treatment of scleroderma.

715 Albany Street, E-5
Boston, MA 02118
Phone: 617-638-4486
Web: http://www.sctc-online.org

 

Canadian Scleroderma Research Group (CSRG)

The Canadian Scleroderma Research Group (CSRG), under the direction of Murray Baron, MD, is a group of rheumatologists and researchers from across Canada working towards the same goal: better understand Systemic Sclerosis (or scleroderma) in order to better treat the people suffering from it.

SMBD Jewish General Hospital
3755 Cote Ste-Catherine Road, Suite A216
Montreal (QC) H3T 1E2, CANADA
Phone: 514-340-8231
Web: http://www.csrg-grcs.ca

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Scleroderma Research Consultants

Scleroderma Research Consultants, LLC was founded in 2010 to advance clinical research, broaden educational efforts and elevate standards of care for persons with scleroderma.

James R. Seibold, MD
97 Deer Run
Avon, CT 06001
Phone: 860-404-2353
Fax: 860-404-2983
Email: jseibold@SclerodermaResearchConsultants.com
Web: http://www.sclerodermaresearchconsultants.com/index.htm

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Scleroderma-Related Associations and Foundations

American College of Rheumatology

The American College of Rheumatology is an organization of physicians, health professionals and scientists that advances rheumatology through programs of education, research and advocacy to foster excellence in the care of people with arthritis and rheumatic and other musculoskeletal diseases (including scleroderma).

1800 Century Place, Suite 250
Atlanta, GA 30345-4300
Phone: 404-633-3777
Web: http://www.rheumatology.org

 

American Medical Association (AMA)

The American Medical Association speaks out on issues important to patients and the nation's health.

515 N. State Street
Chicago, IL 60610
Phone: 800-621-8335
Web: http://www.ama-assn.org

 

Arthritis Foundation

The Arthritis Foundation is the only national nonprofit organization that supports the more than 100 types of arthritis and related conditions with advocacy, programs, services and research.

P.O. Box 7669
Atlanta, GA 30357-0669
Phone: 800-283-7800
Web: http://www.arthritis.org

 

International Scleroderma Network

The International Scleroderma Network is a nonprofit organization whose volunteers and members operate a comprehensive Web site in multiple languages, publish a scleroderma book series and support international scleroderma research. They also manage the Scleroderma Webmaster’s Association, which provides links to many scleroderma resources.

7455 France Avenue. So #266
Edina, MN 55435
Phone: 800-564-7099
Phone: 952-831-3091
Web: http://www.sclero.org

 

NORD (National Organization for Rare Disorders)

NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service.

55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Web: http://www.rarediseases.org/

 

Pulmonary Hypertension Association

The mission of the Pulmonary Hypertension Association (PHA) is to seek a cure, and to provide hope, support and education, and to promote awareness and to advocate for the pulmonary hypertension community.

850 Sligo Avenue, Suite 800
Silver Spring, MD 20910
Phone: 301-565-3004
Phone: 800-748-7274 (Patient to Patient helpline)
Web: http://www.phassociation.org

 

Raynaud’s Association

The Raynaud’s Association is a national nonprofit organization whose mission is to provide support and education to the millions of sufferers of Raynaud’s phenomenon.

11 Topstone Road
Redding, CT 06896
Phone: 800-280-8055
Web: http://www.raynauds.org

 

Research America

The mission of Research America is to achieve funding for medical and health research in both public and private sectors at a level warranted by scientific opportunity and supported by public opinion. Also, the organization strives to better inform the public of the benefits of medical and health research and the institutions and organizations performing such research.

1101 King Street
Suite 520
Alexandria, VA 22314
Phone: 703-739-2577
Phone: 800-366-2873
Web: http://www.researchamerica.org

 

Scleroderma Foundation

The Scleroderma Foundation is a national nonprofit organization providing support, public education and research funding for people with scleroderma and their families and friends.

300 Rosewood Drive, Suite 105
Danvers, MA 01923
Phone: 800-722-4673
Web: http://www.scleroderma.org

 

Society for Women’s Health Research

The Society for Women's Health Research is the nation's only nonprofit advocacy group whose sole mission is to improve the health of women through research.

1828 L St., NW Suite 625
Washington, DC 20036
Phone: 202-223-8224
Web: http://www.womens-health.org

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Other Links

Be Your Best Advocate

A workbook for improving your life with scleroderma by Jan E. Gnall, MPA, BS, MLT, ASCP

Web: http://www.beyourbestadvocate.com/about.php

 

GriefNet

An Internet community for persons dealing with grief, death and major loss. Several support groups are available.

Web: http://www.griefnet.org/

 

Mobile Health Library

Mobile app platform built as a unique education, service and support network for patients and caregivers.

Web: http://mhlib.com/ Enter code: SCLERO

 

Motivating Moves

Motivating Moves is an approach to exercise that emphasizes coordination, balance, flexibility, postural alignment, diaphragmatic breathing, spatial awareness and dynamic movement range.

Web: http://www.motivatingmoves.com/

 

National Family Caregivers Association

This organization is an information source for caregivers nationwide, their site also provides contacts for support groups.

Email: Info@thefamilycaregiver.org
Phone: 301-942-6430
Phone: 800-896-3650
Web: http://www.nfcacares.org/

 

The Relief Foundation

The Relief Foundation was founded out of a need to provide access to information, resources and assistance to improve the quality of life for individuals living with scleroderma. Their mission is to be a resource and support organization dedicated to promoting public awareness and providing Relief to people living with Scleroderma and their families.

Web: http://www.relief-foundation.org/about.php

 

Serenaid - A Triumph of Love

A wonderful personal story of a family coming together and coping with the debilitating disease of scleroderma by Andrea B. Matis

Web: http://www.wmpbooks.com/Serenaid.html

 

Scleroderma: From Pathogenesis to Comprehensive Management

Authored by Drs. Christopher Denton, John Varga and Fredrick Wigley, this essential resource presents the most up-to-date information on scleroderma. A clear and concise synthesis of current concepts in pathogenesis and modern approaches to management, this book is comprised of the authoritative work of international experts. With an integrated multidisciplinary approach to comprehensive care, this book is easily accessible for health care professionals in many fields.

Web: http://www.springer.com/medicine/rheumatology/book/978-1-4419-5773-3

 

What to Do? What to Say? There Has to be Another Way

A book about maintaining friendships with grieving friends and helping yourself by Joy Abrams.

Web: http://empowermentwithjoy.com/buy-book.html

 

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Disability Benefits and Financial Assistance

The information found in this section and elsewhere on our Web site is intended to provide general advice only. The Foundation strongly recommends that financial and insurance-related decisions be made only in consultation with qualified experts.

 

Social Security Disability Insurance (SSDI)

The Social Security disability insurance program (sometimes referred to as SSDI) pays benefits to you and certain family members if you meet certain criteria, such as length of time worked and contribution of Social Security taxes.

Your adult child also may qualify for benefits on your earnings record if he or she has a disability that started before age 22.

Phone: 800-772-1213
Web: http://www.ssa.gov

 

Supplemental Security Income (SSI)

The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.

SSI benefits also are payable to people 65 and older without disabilities who meet the financial limits.

Phone: 800-772-1213
Web: http://www.ssa.gov

 

Partnership for Prescription Assistance (PPA)

The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need for free or at a dramatically lower cost.

Phone: 888-477-2669
Web: http://www.pparx.org/about_us

 

Together RX Access

Together RX Access is a resource to help uninsured Americans gain access to prescription products at significant savings.

Phone: 800-444-4106
Web: http://www.togetherrxaccess.com/Tx/jsp/home.jsp

 

Good Days (formerly known as Chronic Disease Fund)

The Chronic Disease Fund helps underinsured patients with chronic disease, cancers or life-altering conditions obtain the expensive medications they need. They assist patients throughout the United States who meet income qualification guidelines and have private insurance or a Medicare Part D plan, but cannot afford the co-payments for their specialty therapeutics. They pay the patient’s out-of-pocket costs directly to the provider, eliminating the cash flow problems that can prevent them from getting their medications.

Phone: 877-968-7233
Web: http://www.gooddaysfromcdf.org//default.html

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Insurance

Consolidated Omnibus Budget Reconciliation Act (COBRA)

COBRA gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce and other life events.

Web: http://www.dol.gov/dol/topic/health-plans/cobra.htm

 

Medicare

Medicare provides health care services for people aged 65 and older-and for many people with disabilities who are younger than 65. Visit their Web site for more information and to determine eligibility.

Phone: 800-633-4227
Web: http://www.cms.hhs.gov

 

The Medicare Prescription Drug Improvement and Modernization Act of 2003 (MMA)

Signed into law in December 2003, the MMA provides the first-ever prescription drug benefit under Medicare.

Web: http://www.cms.gov/Medicare/Coordination-of-Benefits-and-Recovery/Prescription-Drug-Assistance-Programs/Overview.html

 

Medicaid

Medicaid is a joint federal-state program that provides health care services primarily to low-income and needy people. Visit their Web site for more information and to determine eligibility.

Web: http://www.cms.hhs.gov

 

Pre-Existing Condition Insurance Plan (PCIP)

PCIP, which is administered by either your state or the U.S. Department of Health and Human Services, provides a health coverage option if you have been without health coverage for at least six months, you have a pre-existing condition or have been denied health coverage because of your health condition, and are a U.S. citizen or reside here legally.

Web: http://www.pcip.gov

 

State Health Insurance Counseling and Assistance Programs (SHIP Programs)

For Medicare recipients, every state has a program designed to help find the most appropriate insurance options for your specific situation. Visit their Web site for more information about what is available in your state.

Web: http://www.medicare.gov/contacts/static/allStateContacts.asp

 

Medicare Access for Patients (MapRx)

MAPRx is a coalition of patient, family caregiver and health professional organizations committed to safeguarding the well-being of patients with chronic diseases and disabilities under Medicare Prescription Drug Coverage.

Email: info@maprx.info
Web: http://www.maprx.info/index.php

 

The NAIC State Insurance Departments

The NAIC provides consumers information on government-funded resources available in each of the 50 states.

Phone: 202-471-3990
Web: http://www.naic.org/index.htm

 

Families USA

Families USA is a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health care for all Americans. Working at the national, state and community levels, and have earned a national reputation as an effective voice for health care consumers for 25 years.

Email: info@familiesusa.org
Phone: 202-628-3030
Web: http://www.familiesusa.org/

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Patient Advocacy

Medicare Rights Center

The Medicare Rights Center works to ensure access to affordable health care for older adults and people with disabilities through counseling, educational programs and public policy initiatives.

Phone: 800-333-4114
Web: http://www.medicarerights.org/

 

Ticket to Work and Work Incentives Act of 1999

The Ticket to Work Program provides most people receiving Social Security benefits (beneficiaries) more choices for receiving employment services. Visit their Web site for more specific information on Ticket to Work.

Web: http://www.ssa.gov/work/aboutticket.html

 

American Academy of Family Physicians

This site provides information on appealing denied claims or finding resources to help with high out-of-pocket costs for treatments.

Web: http://familydoctor.org/online/famdocen/home/pat-advocacy.html

 

Equal Employment Opportunity Commission (EEOC)

ADA (Americans With Disabilities Act) makes it unlawful to discriminate in employment against a qualified individual with a disability. Visit their Web site for more information on the Act and for an information guide.

Web: http://www.ada.gov/

 

Patient Advocate Foundation

This foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of financial stability relative to the diagnosis of life threatening or debilitating diseases.

Phone: 800-532-5274
Web: http://www.patientadvocate.org/

 

US Department of Health and Human Services

This government agency provides consumers information on health insurance and a guide to help patients obtain higher-quality care.

Web: http://www.ahrq.gov/consumer/

 

Pharmaceutical Research and Manufacturers of America (PhRMA)

PhRMA advocates for public policies that encourage the discovery of life saving and life enhancing new medicines for patients by pharmaceutical/biotechnology research companies. PhRMA is dedicated to achieving broad patient access to safe and effective medicines through a free market, without price controls; and transparent, efficient regulation and a free flow of information to patients.

Phone: 202-835-3400
Web: http://www.phrma.org

 

The Henry J. Kaiser Family Foundation Women’s Health Policy

This foundation aims to provide policymakers, journalists, advocates and public health practitioners with current analysis on the policies in health financing and delivery that affect women. The particular challenges faced by women at risk for experiencing access barriers, such as those on Medicaid, those who are uninsured and racial and ethnic minorities, are a special focus.

Web: http://www.kff.org/womenshealth/index.cfm

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