Patient Societies

Sarcoidosis patient groups

 

Paula Polite

Paula Yette Polite

Sarcoidosis Research Institute

3475 Central Avenue, Memphis, TN 38111 USA
telephone: (901) 219-6883

e-mail address: paulapolite@bellsouth.net

 

Paula Polite of the Sarcoidosis Research Institute, Memphis, USA, stresses the importance of sarcoidosis patients groups. For several years there has been cooperation between the sarcoidosis patient societies within Europe, as well as between Europe, the USA and Japan. To promote the interest of sarcoidosis patients, delegates of various patient societies have become a member of WASOG and participate in international congresses (Polite PY. Eur Respir Mon 2005;32: 337-39).

 

ginger

 

Additions and edits: Ginger Spitzer

Foundation for Sarcoidosis Research

e-mail address: ginger@stopsarcoidosis.org

 

 

Challenges faced by sarcoidosis patients

Sarcoidosis patients face many complex challenges. A high percentage of patients experience a difficult diagnosis or a misdiagnosis. Reports include the case of a patient who presented symptoms at age 12, but did not receive a proper diagnosis of sarcoidosis until age 40, while other patients have received misdiagnosis of cancer and have been accused of imagining their symptoms and are referred to psychiatrists.

In the treatment of their disease, many patients are prescribed prednisone. Prednisone has many adverse side effects which include: weight gain, diabetes, high blood pressure, mood swings, depression, difficulty sleeping at night, heartburn, acne, thinning of the skin and bones, cataracts, glaucoma, and adrenal gland insufficiency. Patients struggle with the side effects as these adversely affect their quality of life, leaving many patients faced with the difficult decision of whether to endure the side effects of the medication or the symptoms of the disease.

One of the most profound quality of life issue is fatigue. A major percentage of sarcoidosis patients experience severe fatigue, which impairs their ability to function at their normal levels. Another quality of life issue that can be devastating is that many patients look completely healthy to outsiders – the symptoms may not be easily observed by others. Thus, any times when patients complain of their symptoms to family, friends and colleagues, they are not taken seriously, or are accused of making up their symptoms. Others also do not understand why patients are not able to perform work or participate in social activities as they previously did prior to their illness as they “look fine”. It is essential for patients to be empowered with all the information they can about their disease to help educate others and improve their own care options. In addition, informed, engaged patients are CRITICAL to breakthroughs in disease research. This can take place in numerous ways such as online resources and communities, support groups, and conferences and webinars to help patients stay updated on current options as well as understanding the fundamental value they bring to clinical research.

As in many other rare disease arenas, specifically involving patients through education and connections to all stakeholders in the sarcoidosis space will help lead to key research findings.

Patient groups and their importance

Sarcoidosis patients should have a central place in the related medical care, and should be proactive stakeholders in all areas of sarcoidosis. Accessing and adapting strategies based on real patient information is key to ensuring adequate therapies and answers across all care can be addressed. The “patient-centric focus” is being embraced globally as a valuable asset to medical research and medical care. To improve this care, patient societies, support groups, community forums, and patient advocate groups, and medical research foundations have been developed over time started. Patient societies were the first to develop of these groups. In Europe the first sarcoidosis patient society was founded in the Netherlands in 1978.

Thereafter, many other countries followed this initiative (please see the list of websites of the currently active societies). In the USA sarcoidosis patient groups were first formed in 1991. Additionally, in 2001 an European (and later a Mondial) society the European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS) was founded by the Deutsche Sarkoidose-Vereinigung (DSV; Germany), the Sarcoïdose Belangenvereniging Nederland (SBN; The Netherlands), the Sarcoidosis and interstitial lung association (SILA; UK), and the Schweizerische Sarkoidose-Vereinigung (SSARV; Switzerland). EPOS was founded as the international umbrella under which all national patients’ organizations will be represented. EPOS has clearly marked targets and ideals. These include active participation in the foundation of (new) national organizations and also to stimulate international research and provide a forum for the exchange of ideas, experiences and expertise. In addition, the United States provides support via the Foundation for Sarcoidosis Research (FSR), which provides funding and collaborations for research and initiatives which focus on the understanding of sarcoidosis, addresses the causes of the disease, counters the suffering of patients, and advances the potential for a cure. Through collaborations and partnerships with the pharmaceutical industry, biotech companies, medical institutes and professionals, academic institutes, researchers, and patients from across the globe, FSR is producing game-changing initiatives toward a cure.
The priority remains the provision of adequate information for patients and all others involved, in the broadest sense. The suffering of the long-term sarcoidosis patient must be recognized as an unsatisfactory situation. Not only is the cause unknown but also a medical cure and adequate therapies remain undiscovered. In order to help these patients and those who aim to help them, EPOS was brought into being.

All societies have members suffering from sarcoidosis as well as active supporters. The aims of all these societies are to: provide a forum and a network for those having similar experiences and their partners; provide appropriate and up-to-date information; organize meetings for patients and physicians regionally, nationally and internationally, as well as to promote the acceleration of research and updated patient care within the pharmaceutical and healthcare industries. It is therapeutic for patients to communicate with others who have the same symptoms as it confirms that those symptoms are real and not just in their minds. Talking to other patients lends credibility to patients and their families that others truly are experiencing the same frustrations. Patients are also provided the opportunity to discuss their diagnosis and treatment plans that have been effective for them.

Programs and services offered by patient groups

Patients can be KEY elements in progress toward better treatments and a cure! Patient groups and societies educate and connect patients with opportunities to become involved by becoming knowledgeable about sarcoidosis research. This includes participating in clinical trials, tissue donation programs, patient registries and shared data for research. These groups can also offer annual conferences, webinars and comprehensive educational materials, for people across the globe living with sarcoidosis, and connect patients to each other for support and enabling a larger impact.

Patient organizations have also developed and implemented programs to promote the public’s awareness about sarcoidosis. This is beneficial in communicating the symptoms of the disease so that people in general will better understand sarcoidosis patients. Increased awareness also increases the probability of better diagnosis by a physician.

Some sarcoidosis groups engage in research initiatives to identify the cause and a cure for the disease; improved diagnosis; prevention and treatment. Patient websites and hotlines are available to help patients locate physicians knowledgeable of the disease. The organisations have their own advice boards with various members including psychologists, lawyers, insurance physicians, and physiotherapists to ensure that the information provided is as broad as possible. Many groups are involved in advocacy efforts to foster support for sarcoidosis initiatives from the local, state and federal entities. These groups are committed to informing the public about the disease and the dire need for increased funding, as this will in turn advance research and an understanding of the disease

National and international collaborative efforts

Since several years there is cooperation between the sarcoidosis patient societies within Europe, as well as between Europe, the USA and Japan. These collaborations are currently being explored to help make a widespread impact. While the disease affects various populations differently in some cases, in general it is a disease without borders, meaning it impacts patients all over the globe. To promote the interest of sarcoidosis patients as delegates of various patient societies, many of the groups have become members of the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) and participate to the international congresses. Some of the sarcoidosis groups have collaborated to host an educational patient conference in conjunction with the WASOG at various locations around the world.

Sarcoidosis patient groups have successfully joined forces to collaborate on projects that have proven beneficial to patients. Furthermore sarcoidosis patient societies try to stimulate the interest of researchers to design studies related to this disease. For example an award is given to a young researcher every year by the Dutch sarcoidosis society to a promising research project in the Netherlands dedicated to sarcoidosis. This also happens in the U.S. to help promote the pipeline of researchers focused on sarcoidosis.

FSR has built a Sarcoidosis Patient Registry to collect and provide data from patients around the world to share with investigators in pertinent studies to help find treatments and answers. In addition, FSR has launched a new Clinical Studies Network which is comprised on eight international sites that will conduct multi-site trials and studies for major impact in the sarcoidosis research field.

In summary, sarcoidosis patient groups play an integral role in patient care and are a driving force in the quality of the science and research in ultimately identifying the cause and finding a cure for this complex and debilitating disease. Patient groups and societies believe in the power of many to join forces for true game-changing results in sarcoidosis research. The quality of life – and life itself – of thousands of patients depends on a true collaborative process. Only then will we see true results.

Key words:

Educational programs, fatigue, research, sarcoidosis patient societies, quality of life

 

National and international sarcoidosis patient societies

Austria

Österreichischerr SarkoidoseVereinigung (OSV)

e-mail address: sarkoidose@gmx.at

website: www.sarko.at

Belgium

Vereniging voor sarcoïdosepatiënten (BVS)

e-mail address: hilde.santermans@uz.kuleuven.ac.be

website: www.sarcoidose.be

Canada

National Sarcoidosis Organization

website: www.nationalsarcoidosisorganization.com

Denmark

Immun Defekt Foreningen

website: www.idf.dk/

Estonia

EKL – Estonian Lung Association

website: www.kopsuliit.ee

France

Réseau International de Soutien des Malades de la Sarcoïdose Réseau (RISMS)

e-mail address : risms@wanadoo.fr

website: not available right now

Germany

Deutsche Sarkoidose-Vereinigung (DSV)

e-mail address: sarkoidose@aol.com

website: www.sarkoidose.de

Ireland

Irish Sarcoidosis Support Network (ISARC)

website: www.isarc.ie

Italy

Amici contro la Sarcoidosi Italia ONLUS (ACSI)

website: www.sarcoidosi.org

Japan

Japanese Patient Association

e-mail address: info@kyo-sar.com

website: www.kyo-sar.com

The Netherlands

Sarcoïdose Belangenvereniging Nederland (SBN)

This association was founded in 1978 and has currently about 2300 members and more than 100 supporters.

e-mail address: info@sarcoidose.nl

website: www.sarcoidose.nl

Norway

Norsk Sarkoidose Forening

Rune Borgan Isaksen

Medlemsansvarlig

website: www.sarkoidose.no

Portugal

Liga Portuguesa Contra as Doenças Reumáticas – LPCDR

website: www.lpcdr.org.pt/

Spain

Asociación Nacional de Enfermos de Sarcoidosis (ANES)

website: www.sarcoidosis.es

Sweden

Reumatikerforbundet

website: www.reumatikerforbundet.org

Switzerland

Schweizerische Sarkoidose-Vereinigung (SSARV)

e-mail address: info@sarkoidose.ch

website: www.sarkoidose.ch

United Kingdom

SILA: Sarcoidosis and interstitial lung association

e-mail address: info@sarcoidosis.org.uk

website: www.sarcoidosis.org.uk

United States of America

Foundation for Sarcoidosis Research

e-mail address: info@stopsarcoidosis.org

website: www.stopsarcoidosis.org

Sarcoid Networking Association (SNA)

website: www.sarcoidosisnetwork.org

Sarcoidosis Network Foundation

website: www.sarcoid-network.org

EPOS

European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders

e-mail: info@sarcoidosis-epos.com

website: www.sarcoidosis-epos.com

National and international pulmonary fibrosis patient societies

Belgium

Belgische Vereninging voor Longfibrose v.z.w.

website: www.longfibrose.org

Germany

Lungenfibrose.de, hilfe & informationen für betroffene

More information in our flyer

website: www.lungenfibrose.de

d.kauschka@lungenfibrose.de

Ireland

Irish Lung Fibrosis Association

e-mail: info@ilfa.ie

website: www.ilfa.ie

The Netherlands

Belangenvereniging Longfibrosepatiënten Nederland – english description

e-mail: longfibrosevereniging@home.nl

website: www.longfibrose.nl

United Kingdom

SILA: Sarcoidosis and interstitial lung association

e-mail address: info@sarcoidosis.org.uk

website: www.sarcoidosis.org.uk

United States of America

Pulmonary fibrosis foundation

e-mail: info@pulmonaryfibrosis.org

website www.pulmonaryfibrosis.org

Coalition for Pulmonary Fibrosis

e-mail: info@coalitionforpf.org

website: www.coalitionforpf.org

Other rare pulmonary diseases patient societies

The Netherlands

Stichting LAM-Nederland

website: www.lam-nederland.nl

Histiocytose Nederland

website: www.histio.nl

United States of America

Lymphangioleiomyomatosis (LAM) foundation

website: www.thelamfoundation.org

StopCAIDnow Inc. – Stop Childhood autoinflammatory disease

website: www.stopcaidnow.org