Links

Caregivers
 

Caregiver Network, Inc. (CNI)

This is a Canadian based organization whose goal is to provide information on the Internet, education, and care management consulting services. The site contains caregiver articles in the news, a large amount of information about caregiving issues (e.g., home support, daily living, daycare, etc.), and CNI services and products information. Check out the downloadable Canadian Aging and Caregiving Resource Guide (PDF format).

 

 

Family Caregiver Alliance
Founded in 1977, Family Caregiver Alliance is a community-based nonprofit organization that addresses the needs of families and friends providing long-term care at home. FCA now offers programs at national, state and local levels to support and sustain caregivers.

 

Children
 

Children's Health Information Network: Congenital Heart Disease

The goal if this organization is to "provide information and resources to families of children with congenital and acquired heart disease, adults with congenital heart defects, and the professionals who work with them."

 

 

Juvenile Scleroderma Network
What is the Juvenile Scleroderma Network?
We are a unique non-profit membership organization with IRS 501(C)(3) status, that is put together by board members, made up of volunteer parents, health professionals, and people interested in juvenile scleroderma.
Mission Statement: It is hard enough to face the effects of juvenile scleroderma, but facing them alone can be devastating. We invite families nationwide to become involved and help provide support and friendship to children who have juvenile scleroderma.

 

 

Make - A - Wish - Foundation
Founded in 1980, this international organization grants wishes to children with life-threatening illnesses under the age of 18. There are 81 U.S. chapters and 18 international affiliates. A childs request needs to be reffered to a local chapter for consideration. This site contains a FAQ on the organization and its policies, a online wish referral form that will be forwarded to the chapter in your area, and a search machanism to find your local chapter.

 

 

Starlight Children's Foundation
This international organization offers three outpatient and inpatient programs to seriously ill children: wish granting; "Starlight Rooms" (in-room entertainment), and "Fun Center" (mobile entertainment units). This site contains information on each of these programs as well as contact informatio for Starlight

 

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Diet
 

Calorie and Fat Gram Chart for 1000 Foods
Fat, calories, carbohydrate , protein, cholesterol and saturated fat counts, sorted by category. Scroll to the bottom for links to the chart sorted by nutrients.

 

 

Fast Food Calorie Counter: Nutrition Facts and Statistics
Links to nutrition information for over 30 restaurants, including some dine-in restaurants.

 

 

Fast Food Restaurants & Nutrition Facts Compared
Tables comparing values for serving size, calories, fat, trans fat, saturated Fat, carbs and sodium for several foods from many different fast food restaurants. You can click on the table headings to sort by any of those values.

 

 

How to Understand and Use the Nutrition Fact Label
From the FDA Center for Food Safety & Applied Nutrition: "People look at food labels for different reasons. But whatever the reason, many consumers would like to know how to use this information more effectively and easily. The following label-building skills are intended to make it easier for you to use nutrition labels to make quick, informed food choices that contribute to a healthy diet."

 

 

Low Salt Foods
List of brand name products that are low in sodium (taken from the  Pocket Guide to Low Sodium Foods)

 

 

Low Sodium, Low Salt, Heart Healthy Cooking
Find heart healthy recipes here.

 

 

Sodium Content of Common Fast Foods
Sodium content for several popular menu items at fast food chain restaurants.

 

 

Sodium Content of Common Foods
Sodium values of more than 200 common foods, given in mg of sodium for a 100 g (3.5 oz) food portion.

 

 

The World's Healthiest Foods
From the site: "The Foundation's mission is to offer the latest scientific information about the benefits of the World's Healthiest Foods and the specific nutrients they provide. Equally important, we offer practical, simple and affordable ways to enjoy them that fit your individual lifestyle."

 

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Disability
 

Centrelink -- Australia
Centrelink is a statutory authority that provides all services formerly provided by DSS offices, including Disability Assistance. Centrelink is responsible to the Minister for Social Security. This site contains information on disability payment rates, a downloadable (pdf) Centrelink publication entitled "Disability Connections" and contact information for Disability Support Officers.

 

 

Department of Social Security -- United Kingdom
This is the website of the U.K. Department of Social Security. This site contains information about disability allowances. The "Benefits Agency" provides specific information on who is entitled to these allowances and how to file a claim. This is an essential site for your disability financial needs in the United Kingdom.

 

 

DisabilityInfo.gov
The comprehensive Federal website of disability-related government resources.

 

 

Human Resources Development Canada (HRDC) -- Disability Benefits
This website, regarding Canadian disability benfits, resides within the full HRDC website and is written in both English and French. This disability site contains specific information on the Canadian Pension Plan - Disability including how to qualify, how to apply, duration of benefits, and children's benefits.

 

 

Patient Services, Inc.
Patient Services, Inc. (PSI) is dedicated to helping find solutions to many of the social and economic problems that confront families facing chronic conditions. Call your A.C.C.E.S.S. advocate toll-free at 1.888.700.7010.

 

 

Social Security Online -- United States
This is the website of the U.S. Social Security Administration. You can get information about your benefits and personal earnings. This site contains a direct link to all of the Administration's social security disability information including a downloadable Social Security Handbook. This is an essential site for your disability financial needs in the United States.

 

 

Social Security Online, Benefits For Children with disabilities -- United States
This website contains information from the U.S. Social Security Administration regarding children with disabilities and adults disabled since childhood.

 

 

Support and online chat forum for Disability and Social Security
This is a chat and online support group for social security and workers comp. issues. They can help you answer some simple questions, you might have. No more feeling alone in the struggles, you can communicate with others who are going thru the same thing.

 

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Drug Interactions
 

Federal Consumer Information Center -- Drug Interactions: What You Should Know.
Protect yourself and your family from potentially dangerous interactions of prescription drugs, over-the-counter (OTC) drugs, food, and medical conditions.
This publication is also available in PDF

 

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Exercise
 

COPD International
Chair Exercises

 

 

North Dakota State University
Stretching toward better health - chair exercises.

 

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Insurance
 

Health Care Financing Administration (HCFA)
This is the U.S. federal agency that administers Medicare and Medicaid and Child Health Insurance programs. This site contains general and specific information on Medicare and Medicaid for consumers, beneficiaries, clinicians and researchers.

 

 

The Foundation for Health Coverage Education (FHCE)
FHCE Mission: To simplify public and private health insurance eligibility information in order to help more people access coverage.

"Are you or someone you know eligible for free or low cost health coverage? The Foundation for Health Coverage Education (FHCE) offers four unique ways to help you find health coverage in your area." - From the FHCE site

 

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Medical Issues Records
 

CapMed
Personal Health Record? -- Track, manage and monitor health information with the CapMed Personal Health Record (PHR).

 

 

Follow Me
Have your private information follow you wherever you go - out of town, out of state, even out of the country.

 

 

HHS Medical Privacy - National Standards to Protect the Privacy of Personal Health Information
The new HIPAA privacy rules take effect April 14, 2003. The new protections give patients greater access to their own medical records and more control over how their personal information is used by their health plans and health care providers. If you have any questions, this page is the place to start.

 

 

Medic Alert
The nonprofit Foundation provides an emergency medical identification (ID) network for people with medical problems.

 

 

Medictag
MedicTag is a patent pending, digital USB personal medic information and alert device that combines your emergency information with today's technology.

 

 

MyNetRecord
YOUR ONLINE HEALTH RECORD FOR: your medications, your Immunizations, illnesses, accidents and operations, your family history of illness, Doctor visit and more?
It is important to record your past health for correct treatment in the future. Start your own secure and lifelong Personal Health Record.
MyNetRecord enables you to show your Doctors a complete history of your health.

 

 

WebMD Health Manager - store your med info online
WebMD creates web-based tools that help you achieve your health goals.
You can use WebMD's platform to:
Identify and understand personal health risks.
Receive reliable health information and news tailored to your needs.
Communicate more effectively with doctors.
Manage your specific conditions or concerns.
Stay on track with preventive screenings.
Improve your lifestyle, including fitness, nutrition and stress.
Keep family health records in one secure place.

 

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PAH Information
 

American Heart Association
This site contains a one-page fact sheet on Primary Pulmonary Hypertension. The sheet provides a definition of PAH and information on incidence, causes, symptoms, diagnoses, treatments, and prognosis.

 

 

American Lung Association
This site contains a fact sheet on PAH.

 

 

Australian Lung Foundation (ALF)
The Australian Lung Foundation "aims to assist the relief of people suffering from lung disease, and promote lung health in Australia." This site contains information about various lung disorders (not PH, however), a national directory of patient support groups, as well as information for physicians and researchers (ALF grants and awards and patient information booklets). Maybe those of you in Australia could ask ALF to post some information about PH!

 

 

Canadian Lung Association -- L'Association Pulmonaire Canadienne
The Canadian Lung Association is "the umbrella group for the ten provincial Lung Associations. It provides the focus for helping all Canadians to enjoy clean air and have healthy lungs." This site contains links to all of the provincial associations as well as resource pages for health information and educational material for schools.

 

 

ClinicalTrials.Gov
This is an online clinical trials database developed by the National Institutes of Health for patients, family and medical health professionals. The site contains a good overview of clinical trials.

 

 

Diagnosis and Treatment of Pulmonary Hypertension
This is a very informative article on the treatment and stages of pulmonary hypertension.

 

 

National Heart Blood and Lung Institute (NHBLI) booklet on Primary PH
The National Heart Blood and Lung Institute is an institute of the U.S. National Institutes of Health (NIH). Thre are several pages of information on PH.

 

 

Portal Hypertension -- American Academy of Family Physicians
This is site contains a one page description of Portal Hypertension. It covers cirrhosis as a cause, as well as symptoms and treatments.

 

 

Pulmonary Hypertension: Definition, Diagnosis, Treatments, and Pulmonary Hypertension Clinic
Dr. Dianne Zwicke, Cardiovascular Disease Consultants, Milwaukee, Wisconsin

 

 

Pulmonary Reviews
"Pulmonary Reviews is a monthly news magazine for physicians who specialize in pulmonary and/or critical care medicine. It provides physicians with information on disorders that affect the lungs and respiratory tract. "

 

 

The American College of Chest Physicians
The American College of Chest Physicians (ACCP) is a medical specialty society of physicians, surgeons, allied health professionals, and individuals with PhD degrees who specialize in diseases of the chest: pulmonology, cardiology, cardiovascular and cardiothoracic surgery, hypertension, critical care medicine, and related disciplines.

 

 

The Art and Science of the Right Heart
Cardiopulmonary Disease: Focus on Pulmonary Arterial Hypertension.
This CME activity is based on transcripts and slides of presentations as delivered by the faculty at the "The Art and Science of the Right Heart: Diagnosis and Treatment of Cardiopulmonary Disease: Focus on Pulmonary Arterial Hypertension" symposium held at the Rosen Centre in Orlando, Florida on November 10, 2003.
Presented by Medscape

 

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PAH Treatments
 

Ambrisentan (Letairis®)

 

 

Ambrisentan (Volibris®)

 

 

Bosentan (Tracleer®)

 

 

CenterWatch
CenterWatch is a "Boston-based publishing and information services company and a business of The Thomson Corporation. We provide information services used by patients, pharmaceutical, biotechnology and medical device companies, CROs and research centers involved in clinical research around the world."

"You can use this site to find a wealth of information about clinical research, including listings of more than 41,000 active industry and government-sponsored clinical trials, as well as new drug therapies in research and those recently approved by the FDA." [Quoted from the CenterWatch website]

 

 

Epoprostenol for Injection (Veletri®)

 

 

Epoprostenol sodium (Flolan®)

 

 

Flolan Fashion File
This site offers options for "comfy ways to keep you and your Flolan cool." Check out this "cool" site and send in your own suggestions!

 

 

GlaxoSmithKline UK
Glaxo Wellcome is the pharmaceuticals comapny that developed Flolan (Epoprostenol). This page has a listing of information about Flolan.

 

 

Iloprost (Ventavis®)

 

 

Nitrite (Aironite®)

 

 

Portable Oxygen (What user-patients need to know)
Portable Oxygen, A User's Perspective, produced by Pete Wilson.
This website focuses on the portable equipment you use. It brings together information collected from those who make, distribute, service, and use the equipment. It is the pupose of this website to help you understand yourself and your portable oxygen system so that you can get the full benefit from it.

 

 

Sildenafil Citrate (Revatio®,Viagra®)

 

 

Sitaxsentan Sodium (Thelin®)

 

 

Tadalafil (Adcirca®)

 

 

Treprostinil (Remodulin®)

 

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Prescription Assistance
 

Needy Meds
This site contains a list of drug assistance programs compliled by Dr. Rich Sagall

 

 

NORD - National Organization for Rare Disorders, Inc.
NORD's Patient Assistance Programs assist uninsured or under-insured individuals in securing life-saving or life-sustaining medications.

 

 

Patient Assistance Program -- Glaxo Wellcome
This site contains information about Glaxo Wellcome's patient assistance program, a 90 day source of financial assistance. Flolan is included in the program.

 

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Related Diseases
 

Congenital Heart Defects - Medline Plus

 

 

Congenital Heart Disease - Adult Congenital Heart Association (ACHA)
ACHA is an organization for patients with Congenital Heart Disease (CHD).

 

 

COPD - Healthline
Learn about this disease, read about treatment options and find support.

 

 

COPD - National U.S. Library of Medicine
The world's largest medical library.

 

 

Eisenmenger's Syndrome -- Mayo Adult Congenital Heart Disease Clinic
This site contains a comprehensive description of Eisenmenger's Syndrome. It includes a definition, detailed list of symptoms, treatments, and general guidelines for Eisenmenger's patients.

 

 

HIV - Pulmonary Hypertension and HIV
This article is also available in PDF

 

 

Lupus - Lupus Canada
Lupus Canada is a national voluntary organization that: promotes research to find the causes and a cure for lupus; advocates on behalf of the lupus community; facilitates and coordinates education and public awareness and supports organizational growth and development.

 

 

Lupus - Lupus Foudation of America (LFA)
The mission of this organization is to Improve the quality of life of people with lupus, their family and friends through detection of the disease, alleviation of suffering, and the eradication of lupus through research.

 

 

Scleroderma - Juvenile Scleroderma Network
From the site: "We are a unique non-profit membership organization with IRS 501(C)(3) status, that is put together by board members, made up of volunteer parents, health professionals, and people interested in juvenile scleroderma."

 

 

Scleroderma - Medline Plus Health Information - From the National Library of Medicine
This link leads to the section on Scleroderma. It includes information on clinical trials, diagnosis, symptoms, research and much more.

 

 

Scleroderma - Scleroderma Clinical Trials Consortium(SCTC)
SCTC is a worldwide affiliation of more than 50 academic medical centers with dedicated programs for persons with scleroderma and related diseases.

 

 

Scleroderma - Scleroderma Foundation
The National Scleroderma organization providing support, education, and research. The site contains: a scleroderma fact sheet; annual conference information; support groups; SF publications, and research grant information.

 

 

Scleroderma - Scleroderma from A to Z
This is a comprehensive site designed and maintained by a scleroderma patient, Shelley Ensz. Ms. Ensz is the founder of the Scleroderma Webmaster's Association. This site contains medical and support information, including a medical newsroom, support groups and online support.

 

 

Scleroderma - Scleroderma Research Foudation
The mission of this foundation is to fund and facilitate "the most promising, highest quality research and placing the disease and its need for a cure in the public eye."

 

 

Sleep Apnea - CPAP / BiPAP backups part 1
Why bother with a back-up system?

 

 

Sleep Apnea - CPAP / BiPAP backups part 2
A battery backup system for use with CPAP treatment

 

 

Sleep Apnea - SleepApneaInfo.com
SleepApneaInfo.com and the "Sleep Well, Be Healthy" campaign are committed to educating the public about obstructive sleep apnea (OSA), its symptoms and effects, and helping to improve the lives of the 18 million Americans afflicted with the condition.

 

 

Sleep Apnea -- American Sleep Apnea Association (ASAA)
Founded in 1990, this association is dedicated to "reducing injury, disability, and death from sleep apnea and to enhancing the well-being of those affected by this common disorder."

 

 

Sleep Disorders - The American Academy of Sleep Medicine (AASM)
From the website: Dedicated to the advancement of sleep medicine and related research, the AASM's mission is to assure quality care for patients with sleep disorders, to promote the advancement of sleep research and to provide public and professional education.

 

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Support Organizations
 

American Lung Association Action Network
Stay up to date and take action on lung-related issues.

 

 

Lupus Foundation of America (LFA) - Message Boards

 

 

National Home Oxygen Patients Association (NH OPA)
The National Home Oxygen Patients Association (NHOPA) is a non-profit organization "devoted exclusively to improving the lives of people... who require supplementary oxygen on a regular basis."

 

 

PHA-Australia
A website devoted to providing hope, support and education.

 

 

PHA-NL
The official Dutch foundation for PH-patients.

 

 

PHCentral.org

A website to unite ph patients, family and friends from all over the world.  You will find support groups listed here, a private message board, dynamic patient diaries, regularly scheduled chats and much, much more.

 

 

Phneighborhood
Various articles on Pulmonary Hypertension, chat rooms, and general support. Medicine overview, clinical trials, message boards, ask a nurse.

 

 

Pulmonary Hypertension Association
The mission of the Pulmonary Hypertension Association (PHA) is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness.

 

 

Pulmonary Hypertension Association Romania

 

 

Rest Ministries
Rest Ministries, Inc. [TM] is a non-profit Christian organization that exists to serve people who live with chronic illness or pain, and their families, by providing spiritual, emotional, relational, and practical support through a variety of resources, including a monthly newsletter, Bible studies and small group materials.

 

 

Scleroderma Support Club
This site contains a message board and a chat room. It is a Yahoo 'Club" so you may have to register to use certain features.

 

 

Yahoo Club for Scleroderma Friends and Family
This site of "club" is contains a message board and a chat room for those with Scleroderma. You will need to register in order to post messages

 

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Transplant
 

Children's Organ Transplant Association
The Children's Organ Transplant Association provides fundraising assistance for children and young adults needing life-saving transplants and promotes organ, marrow and tissue donation.

 

 

Children's Organ Transplant Association (COTA)
The mission of the Children's Organ Transplant Association (COTA) is "to ensure that no US citizen is ever denied a life-saving transplant, or access toa transplant waiting list, due solely to the lack of funds. The site contains the associations online newsletter and a list of current patient fundraising compaigns.

 

 

International Society for Heart and Lung Transplantation (ISHLT)
This International Society is geared to the medical professional involved in the end-stage heart and lung transplantation. They maintain an international transplant registry, award research grants, and they publish the JOURNAL of HEART and LUNG TRANSPLANTATION.

 

 

National Foundation for Transplants
Organ and bone marrow transplant patients nationwide turn to National Foundation for Transplants when they need help in paying for transplant costs not covered by insurance. NFT provides healthcare support, advocacy, and financial services to transplant candidates and recipients nationwide.

 

 

National Transplant Assistance Fund (NTAF)
Established in 1983 by a group of medical professionals, this is a private non-profit organization. They have awarded over 1400 medical assistance grants to transplant patients. This site includes patient and medical professional information that focuses on the financial aspects of transplantation.

 

 

Organ Donation
This U.S. government site is designed to encourage organ donation by addressing common myths about transplantation and providing answers to fequently asked questions.

 

 

Second Wind
The mission of this organization is to provide "support, love, advocacy, education, information and guidance" to lung transplant recipients, lung surgery candidates, people with related pulmonary concerns, and their families.

 

 

The Gift of a Lifetime
In this dramatic photo documentary journey, experience the stories of patients whose hopes rise and fall with each passing day as they wait for organ transplants. Learn how families look beyond their grief in order to give life to others.

 

 

The Pulmonary Retransplant Registry
This registry was established to "provide a summary of the worldwide experience with redo lung transplantation at the 12th annual meeting of the International Society for Heart and Lung Transplantation in 1992."

 

 

Transplant Recipients International Organization, Inc. (TRIO)
TRIO is an international organization committed to donor awareness, support, education, and advocacy.

 

 

TransWeb.org
TransWeb.org is an educational website based at the University of Michigan. The very comprehensive site contains "news and events, real people's experiences, the top 10 myths about donation, a donation quiz, and a large collection of questions and answers, as well as a reference area with everything from articles to videos."

 

 

United Network for Organ Sharing (UNOS)
Mission: "To advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients." The U.S. government has given UNOS the responsibilty for administering the Organ Procurement and Transplantation Network (OPTN) and the U.S. Scientific Registry on Organ Transplantation.

 

 

UNOS Transplant Patient DataSource
The UNOS website contains a section called the "Transplant Patient DataSource". In this section, you can learn about how a specific organ functions and view waiting list information and examine very detailed and up-to-date transplant and donor data for that specific organ.

 

 

USTransplant.org-Scientific Registry of Transplant Recipients (SRTR)
"Supports the ongoing evaluation of the scientific and clinical status of solid organ transplantation including kidney, heart, liver, heart-lung, lung, and pancreas transplants."

 

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Transportation
 

Air Care Alliance
Air Care Alliance is an umbrella organization for flying organizations that are dedicated to serving the community. Its mission is to support communication and cooperation among these organizations. This site contains an extensive listing of contact information for flying organizations throughout the United States

 

 

Angel Flight
This organization provides free air transportation for people to gain access to medical treatment they might otherwise have been denied for lack of transportation. They serve the western U.S. Only. The site is filled with information for patients, medical professionals and volunteer pilots. There is even an online form for health care professionals to request an "Angel Flight."

 

 

Hope air - Vols D'espoir
This Canadian Organization provides air transportation for Canadians who need to gain access to medical care. This site will guide you through the procedure required to make a request for assistance.

 

 

United Airlines TRIO Program
The TRIO/United Airlines Travel Program is a cooperative arrangement between TRIO and the United Airlines Charity Miles Program. It provides for transplant recipients, candidates, living donors and care-givers cost-free air transportation when travel is transplant-related.

 

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