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Issue 32, HSCNews International (September 2006)
Eastern European health campaigners' latest views on patients' rights in their countries
Eastern European patient groups are in the vanguard of campaigns that promote a patients' rights-oriented approach within healthcare systems. This issue of HSCNews outlines several reasons why. HSCNews also interviews four key health campaigners from the region, who explain why their groups believe patients' rights to be a lever capable of improving the health of populations. The four executives are: Aya Lilova, chair of Sofia-based Women Without Osteoporosis (a member of the International Osteoporosis Foundation, IOF); Lubos Olejár, president of Svaz Pacientu Ceské Republiky, the Czech Association of Patients; Roman Sadzuga, president of Polskie Stowarzyszenie Pomocy Osobom Chorym na Szpiczaka, and vice president of Myeloma Euronet; and Katarina Bervar, legal adviser to Pravno-Informacijski Center Nevladnih Organizacij (PIC) [Legal-Information Centre for NGOs (LIC)]. The rest of issue 32 of HSCNews looks at charters, research, and websites on the theme of patients' rights.
22 pages.
Two charters on patients' rights
- Fédération Européenne des Retraites et Personnes Âgées (FERPA) [Belgium]. Charter of Rights of Dependent Persons.
- European Pain Network (EPN) [Belgium]. A charter of intent for pain advocacy.
Research into patients' rights
- Association of Health Education and Promotion of Health (MIA) [Macedonia]. The Rights of the Patients in Macedonia study.
- Association 'Women Without Osteoporosis' [Bulgaria]. A study into patients' rights in Bulgaria.
Websites that provide information about (or are campaigning for) patients' rights
- Association of European Cancer Leagues [Belgium]. Index Foundation [Bulgaria]. European Association for Children in Hospital [virtual]. Active Citizenship Network [Italy]. Patients' Rights Ombudsman [Japan]. Healthy Documents [Malaysia]. Walter Keim [Norway].
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cover of HSCNews International,
issue 32, September 2006
Patients' rights: the views of health campaigners from Eastern Europe
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Issue 23, HSCNews International (November 2005)
Article: What patients and the public think of electronic medical records (EMRs): a global survey
Billions of dollars are currently being spent on electronic medical record (EMR) systems. More than 70 countries have begun projects to set up their own national schemes. A number of well-publicised opinion polls have recently attempted to sample public attitudes to EMRs. Unfortunately, these polls have not produced the final word on the subject – far from it, in fact. Previous polls have been unable to access the views of an important sector of the population with a strong vested interest in whether (and how) EMRs are implemented – namely people who have been subject to discrimination and stigmatisation as a result of their medical condition (such as people with a disability, people with HIV/AIDS, with a mental health problem, or a neurological problem). To discover what this body of people (as well as the rest of the population) think about the widespread introduction of EMRs, HSCNews International decided to conduct its own survey on the subject during October-November 2005. 208 campaigning groups from around the world responded to the EMR survey. The survey found that a significant proportion of citizens around the world believe that the risks of electronic medical records may outweigh their benefits, and that insufficient safeguards have been put in place to protect the privacy and confidentiality of personal medical information. Most enthusiastic about the technology were patients with cancer or heart disease. Full details to be found in the article.
32 pages.
Members' News
- Coalition for Active Living [Canada]. Prevention takes a back seat in Canada.
- Community of Friedrich Ataxia [Pakistan]. The group's founder tells his story.
- International Osteoporosis Foundation [France]. 'Exercise: move it or lose it'. A model campaign.
Research
- European Brain Council [Belgium] study, 'Costs of Disorders of the Brain in Europe' (June 2005), estimates the cost burden of brain disorders in Europe.
- Carers Australia [Australia] report, The Economic Value of Informal Care (August 2005), identifies the costs of providing informal care in Australia.
- Listening Post Project [USA] report, Nonprofit Governance and Accountability (n.d. 2005), examines the financial responsibility of American charities.
Publications
- European Commission, Green Paper. Promoting the Mental Health of the Population: Towards a Strategy on Mental Health for the EU .
Advertorial
- Association of Broadcasting Doctors [UK].
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cover of HSCNews International,
issue 23
Appendix of HSCNews International,
issue 23
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Issue 22, HSCNews International (October 2005)
Article: Health campaigners want the new clinical trials registries to take account of the needs of users – not just the needs of scientists
When, in 2004, New York State Attorney-General Eliot Spitzer sued a pharmaceutical company for allegedly concealing negative information about one of its products, the subject of clinical trials registration became a matter of political and media concern. Until then, any organisation or person attempting to evaluate the worth of a new pharmaceutical or treatment in humans could opt to make their results public or not – as they saw fit. In 2005, a broad consensus has appeared, arguing that a lack of transparency can no longer be tolerated in clinical trials. Key healthcare stakeholders insist that a secretive clinical trials system has the potential for inflicting harm on patients. The proponents of change have joined forces to reform the process of clinical trials registration. This article contains: 1.) Interviews with three key health advocates (one from the UK, one from Germany, and one from the USA), all of whom are involved in the debate on clinical registries. 2.) Supplementary information about the debate's other key players. 3.) A compilation of 44 patient organisations that provide detailed information on clinical research relevant to their constituency. 4.) Tables of key events that have prompted the call to create a centralised clinical trials registry.
35 pages.
Members' News
- Give Life NZ [New Zealand] shows the benefits of obtaining celebrity support.
Research
- Highland Users Group [Scotland] report, Medication for People with Mental Health Problems (July 2005), contains the opinions of 73 people who use medication.
Publications
- Multiple Sclerosis International Federation [UK] guide for patient groups, How to Work With the Media .
New websites
- http://www.doyoupanic.co.uk aims to inform people with obsessive, destructive panic that recovery is possible.
Events
- EU Paediatric Legislation and Paediatric Research, a workshop by the European Forum for Good Clinical Practice [Belgium]
- Producing Effective Information for Patients, a conference by the Patient Information Forum [UK].
- Having a Say: My Life! My Voice! My Choice!, a conference by the Victorian Advocacy League for Individuals with Disability [Australia].
Letters
- Alex Gardner, advisory panel, International Paruresis Association [US], and consultant, UK Paruresis Association
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issue 22 |
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Issue 20/21, HSCNews International (Summer 2005)
Article: Campaigners' views on the user-friendliness of national healthcare systems worldwide
Between May and August 2005, HSCNews International conducted a global survey of health campaigners. The survey asked campaigners about the user-friendliness of their national healthcare systems. Respondents commented on six key indicators of system user-friendliness. The survey received responses from 406 health campaigners from 38 different countries. The groups participating in the survey specialised in a wide range of healthcare issues and diseases. Despite the willingness of politicians in many countries to make patients' needs paramount, and the existence of legislation and policies to promote the cause of healthcare users, this HSCNews International survey found that none of the healthcare systems around the world could be regarded as truly user-friendly. That said, Western Europe performed best in the survey. Just behind was Australasia and the Pacific Rim, where national healthcare systems performed at a level similar to those of Eastern Europe. The countries of North and Central America, by contrast, were among the worst performers in the survey. One of the survey's most surprising findings was the poor rating that the 41 respondents from Canada gave their country's healthcare system. Canada has long claimed a high-quality healthcare system that provides universal access. Yet many of the Canadian health campaigners responding to the survey were scathing about their healthcare system. Full details to be found in the article.
23 pages.
Issue 20/21 also contains a 100-page Appendix (which holds 23 pages of charts of survey results; a list of respondents who wished to be named; and 55 pages of respondents' comments about the user-friendliness of their national healthcare systems).
Members' News
- La Fundación Hipercolesterolemia Familiar [Spain] becomes a member of a new Spanish patients' umbrella group.
- Give Life NZ [New Zealand] requests that as many people as possible sign its online petition on organ donation.
- Health Action International Europe [the Netherlands] organises a seminar to compare systems in which patients can report adverse drug reactions.
- Lincolnshire Post-Polio Network [UK] presents a conference paper on maximising the value of a patient's consultation with a doctor.
Publications
- Multiple Sclerosis International Federation [UK] launches a document designed to enable people to assess their quality of life: Principles to Promote the Quality of Life of People with Multiple Sclerosis .
New websites
- http://www.alter-eu.org is the website of a new alliance of campaigning groups that advocates stringent rules to govern today's largely-unregulated activities of the EU lobbying industry.
Events
- NICE 2005: Health and Clinical Excellence, a conference by the National Institute for Health and Clinical Excellence [UK]
- Future Europeans: the Right Start in Life for Children and Young People in Europe, a conference by the European Public Health Alliance [Belgium].
- Patients for Patient Safety Workshop, an international workshop by Patients for Patient Safety [UK]. |
cover of HSCNews International,
issue 20/21
Appendix of HSCNews International,
issue 20/21
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Issue 19, HSCNews International (June 2005)
Article: From market-driven to needs-based drug research: Médecins Sans Frontières' assertive new campaign
Issue 19 contains a report on a June 8th 2005 meeting held by Médecins Sans Frontières (MSF) in London. The meeting attempted to pinpoint what should be done about the gap that exists in research for the world's neglected infectious diseases--conditions that run rampant in the poorer countries of Africa, Asia and Latin America. Leaders of the world's richest economies included the subject of neglected diseases among their discussions at the July 2005 G-8 meeting in Gleneagles, Scotland--hence the timing of the MSF meeting. Attending the MSF meeting were 200 representatives from the NGO communities of 20 countries, plus academics, government officials, and industry executives. In this sense, the meeting was exceptional--until now, pharmaceutical companies and MSF could be viewed as opponents. Three very different approaches to reforming R&D for neglected diseases were discussed at the meeting: public-private partnerships (PPPs); new market mechanisms for promoting innovation; and a bigger role for governments. Two areas of dissension emerged: firstly, how to recognise R&D priorities that promote public health, rather than industry profits; and, secondly, how to identify solutions. At the end of the meeting, two camps emerged and went their separate ways: executives from the four PPPs attending the meeting (plus industry representatives, and managers from four other PPPs); and MSF and various sympathetic organisations. Full details to be found in the article.
23 pages.
Members' News
- International Brain Tumour Alliance [Australia and the UK] is created--a new international advocacy group.
- Treatment Action Campaign [South Africa] deplores South Africa's progress in implementing the national HIV/AIDS Treatment Plan.
Publications
- Global Equity Gauge Alliance [South Africa], Medact [UK], and the Peoples Health Movement [India] author a continuing assessment of trends in global public health, the Global Health Watch 2005-2006 .
- Stichting Bloedlink [Netherlands] reports its sources of pharmaceutical funding in the group's newly-issued 2004 Annual Report .
New websites
- patientstogether.com [Ireland], a new grass-roots advocacy organisation specialising in poor conditions in Ireland's hospital accident and emergency (A&E) departments.
Events
- 28th Congress of the World Federation for Mental Health--a conference by the World Federation for Mental Health [US]
- 1st Brazilian Patient Advocacy Leaders' Summit (and related events)--a summit and congress by the Associação Nacional de Assistência ao Diabético [Brazil]. |
cover of HSCNews International,
issue 19
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Issue 18, HSCNews International
(May 2005)
23 weblinks to different campaigning groups
Article: Hospital-acquired infections: health campaigners push for radical reform
Issue 18 contains the results of a May 2005 HSCNews global survey of health campaigners on this important subject of HAIs. The survey was commissioned by the Irish Patients' Association (IPA), but financed and conducted by HSCNews . Survey findings included: three quarters of the 102 respondent campaigners did not think that measures taken in their home country to combat the rising levels of HAIs were comprehensive enough. The survey also learned that over 80% of respondent campaigners believed politicians and policymakers have been slack in tackling HAIs, and that patients, the public, and the media have instead been responsible for most of the drive to reduce the levels of HAIs. Issue 18 contains interviews with three of the leading campaigners in HAI advocacy - Stephen McMahon of the Irish Patients' Association; Simon Williams of UK group, The Patients' Association; and Lisa McGiffer t, who runs the www.stophospitalinfectionscampaign.org campaign of US group Consumers Union. The three advocates explain the HAI situation in their own countries. Advice gathered from the three high-profile campaigners and the other 102 groups responding to the survey has allowed HSCNews to draw up a 'wish list' of seven vital actions that must be initiated in countries with an HAI problem if the fight against HAIs is ever to be successful. Full details to be found in the article.
55 pages.
Members' News
- Mental Health Europe [Belgium] releases the results of its project into the economic implications of mental health problems.
Events
- 7th Pan-European Conference, by Europa Donna [Italy].
Publications
- Four European NGOs and a US foundation commission a report that highlights the tortuous process of applying for European Commission funds.
Research
- Bridges.org [South Africa] evaluates a health service provider's innovative use of mobile telephony in TB treatment.
- The Communication Initiative [Canada] releases the results of its survey into three problems of universal concern in the field of childhood immunisation.
Letters
- Mira de Vries of the Association for Medical and Therapeutic Self-Determination [Netherlands] writes about the subject of testing medicines on children. |
cover of HSCNews International,
issue 18
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Issue 17, HSCNews International
(April 2005)
53 weblinks to different campaigning groups
Article: Six campaigners express their opinions on tackling childhood obesity
In May 2004, the World Health Organization (WHO) launched its 'Global Strategy on Diet, Physical Activity, and Health'. Included in the Strategy were a number of initiatives to combat the recent rapid rise in childhood obesity, now regarded by the WHO as a global problem. This HSCNews International article looks at the current involvement of health campaigning groups in the subject of children's overweight. To gain some insight into health campaigning groups' attitudes to childhood obesity, HSCNews conducted interviews with the following six key people during April 2005: Christine Walker of the Chronic Illness Alliance (CIA) in Australia; Valentina Ocheretenko of the Ukrainian Diabetes Federation; Matt Longjohn of the Consortium to Lower Obesity in Chicago Children (CLOCC); David Haslam of the UK's National Obesity Forum (NOF); Fadlo Fraige Filho of the Associa?
29 pages.
Article: Addendum to the January 2005 HSCNews survey (health campaigners' activities in 2004 and their plans for 2005)
In issue 13/14, January 2005, HSCNews International published the findings of its January 2005 survey of senior executives from consumer, disability and patient organisations. The 276 survey respondents explained their health campaigns and management challenges during 2004, and told of their plans for 2005. Since the publication of that article, a further 25 campaigning groups also responded to the survey. This article contains the results of their contributions, and features profiles of those groups that wished to be attributed.
10 pages.
Members' News
- Canadian Women's Health Network - An article in the latest issue of the Canadian Women's Health Network Magazine.
- Health Action International Asia Pacific [Sri Lanka] - Four recently-released position papers introducing subjects related to essential medicines.
- International Baby Food Action Network - Analysis of how the South Asia branch of the IBFAN conducted a successful campaign to influence the Indian government in early 2005.
New websites
- Three major US patient organisations combine to launch a new informational resource for patients, patientINFORM.org, in May 2005.
Events
- 1st World Congress on Gender-Specific Medicine, by the Association for Gender-Specific Medicine [US].
- 3rd Mental Health and Deafness World Congress, by the European Society of Mental Health and Deafness [UK]. |
cover of HSCNews International,
issue 17 |
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Issue 16, HSCNews International
(March 2005)
49 weblinks to different campaigning groups
Article: Regulating children's medicines in Europe-campaigners express their opinions
During March 2005, HSCNews polled the opinions of 75 European consumer, disability, patient and statutory organisations with an interest in children's hea lth. The survey was conducted on behalf of one of the HSCNetwork members, Vereniging Samenwerkende Ouder-en P?tientenorganisaties (VSOP) – the Dutch Genetic Alliance. HSCNews was working in collaboration with the European Forum for Good Clinical Practice (EFGCP) on this project. The survey aimed to learn what health advocates thought of the state of research into children's medicines in Europe, and also hoped to discover their opinion of the European Commission's proposed 'Regulation on Medicinal Products for Paediatric Use' (unveiled in September 2004). The survey results are to be conveyed to the EU Commission, Parliament, Council and to other key stakeholders in Europe.
The main overall findings of the survey were that health campaigners want to know far more about the European Commission's September 2004 proposed legislation on children's medicines, and that many campaigners believe the Commission's proposal is in need of significant improvement.
24 pages.
In Focus
Maria Escudero, founder of Menudos Corazones, a Spanish patient organisation devoted to helping children with cardiopathy, talks to HSCNews about the organisation's fight to improve the current quality of medicines available to treat children in Spain.
4 pages.
Article: Consumer-driven health reform – American campaigners have their say
Until recently, all healthcare expenditure decisions in the US lay in the hands of insurers and doctors. HSAs, however, are America's new experiment in consumer-driven healthcare. These accounts enable the public to save their healthcare dollars, and then to spend them as they please. HSAs have been heralded as one of the largest consumer-driven experiments in health reform worldwide.
During March 2005, HSCNews polled the opinions of 55 consumer, disability, and patient organisations from across the US. The survey aimed to discover what health advocates knew and thought about HSAs.
The main overall findings of the survey were that US campaigners hold conflicting opinions about HSAs. Most campaigners seem to believe that HSAs will do little to serve the interests of the chronically-ill and poor. A few campaigners, though, think that HSAs may be the salvation of America's healthcare woes.
21 pages.
Members' News
- Active Citizenship Network [Italy] – A preliminary report on patients' rights in Europe.
- MindFreedom [US] – A conference on activism for human rights in mental health.
Events
[Note that any invitations are for patients, health campaigners or social campaigners only]
European Forum for Good Clinical Practice and the European Platform for Patients' Organisations, Science and Industry [Belgium] – Forum discussion examining the value and impact of the 2004 EU Clinical Trials Directive.
Letter
Adrian van Bellen Bennebroek of Stichting Bloedlink and HEART EU [Netherlands] writes about familial hypercholesterolemia and his group's nomination for the Transparant Prijs 2004.
Advertorial
- Associata Bolnavilor de Cancer din Romania [Romania] – An explanation of the aims of the group.
- Hellenic League Against Rheumatism [Greece] – A request for information on rheumatic disease and employment. |
cover of HSCNews International,
issue 16 |
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Issue 15, HSCNews International
(February 2005)
Main article: 2005 review of health campaigners' Annual Reports
In April 2004, HSCNews analysed the Annual Reports of 68 campaigning groups ['Health campaigners, fundraising and the growth of industry involvement', HSCNews, issue 6, pages 6-62]. The February 2005 issue of HSCNews updates and expands that earlier work. The most recent Annual Reports of 125 campaigning groups from all over the world were studied. Most of the Reports dated from 2004 or 2003.
HSCNews found that the health advocacy sector is financially huge. Just this 125-strong sample taken from the hundreds of thousands of health campaigning groups worldwide drew in an annual revenue of US$8 billion [Euros 6 billion]. Almost as surprising was the finding that half of this sum of $8 billion went into the accounts of only five of the 125 groups. Subjects examined in the article include: transparency shortcomings in the Annual Reports; the disadvantages of bequests; tackling austerity (reducing costs, selling assets, and even merging); novel sources of income; policies on tobacco industry funding; and policies on ethical pharmaceutical funding.
A four-page table studies the degree of correlation between the therapeutic areas of interest of 12 pharmaceutical companies and the specialities of the campaigning groups from the 125-strong sample that were in receipt of donations from these companies. The table is an attempt to determine whether pharmaceutical company donations are motivated by pure altruism or by marketing self-interest.
Another table looks at donations made by pharmaceutical companies to the survivor communities of the December 2004 Tsunami.
Minipoll results: nine patient groups from four different countries tell HSCNews their position on pharmaceutical company funding.
22 pages.
In Focus
Sue Bergeson, Vice President of US group Depression and Bipolar Support Alliance (DBSA), explains the organisation's attitude to the topic of pharmaceutical funding.
3 pages.
Events
[Note that any invitations are for patients, health campaigners or social campaigners only]
- Learning Disabilities Association of America.
- Patients' Rights Advocacy Waikato Inc [New Zealand].
Members' News
- ALS Society of Canada – Demonstrates a successful method of fundraising and reaffirms its commitment to its manual for people with the condition.
- European Men's Health Forum [Belgium] – Preliminary results of an EU-wide survey of individuals living with HIV/AIDS.
- Heart EU [Netherlands] – A new patient group working in the area of cholesterol-induced mortality.
Publications
Review of Rebecca L. Libutti's book, That's Unacceptable: Surviving a Brain Tumor - My Personal Story [US].
Research
Consumer Project on Healthcare [US] – A letter to the WHO on a new formula for funding and encouraging medical research.
Letters
Angela Dickson of the Samantha Dickson Research Trust [UK] writes about her group's activities in the area of paediatric brain tumour research.
Appendix to issue 15
Each of the 125 campaigning groups studied for issue 15 is given an entry in this Appendix. Every entry sets out a brief financial overview of the group for that financial year; plus the group's annual revenue in local currency, US $ and Euros; the percentage increase or decrease in revenue from the year before; the group's overheads as a percentage of revenue; and the sources of its revenues (events; conferences; members' dues, etc). The entry also lists the pharmaceutical and medical device companies that donated to the group during the financial year, plus other healthcare company donors from outside the pharmaceutical or medical device industries (such as providers, insurers, and publishers, etc).
62 pages. |
cover of HSCNews International,
issue 15
Appendix to HSCNews International,
issue 15 |
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Issue 13/14, HSCNews International (January 2005)
Main article: Health campaigners reflect on 2004 and tell of their plans for 2005
Between December 2004 and January 2005, HSCNews International surveyed health advocacy groups about their 2004 activities and their plans for 2005. The 276 respondents were drawn from all over the world and from all the major disease areas. Consumer and statutory bodies also replied to the survey. We asked the groups to comment on their major themes of 2004, and tell us about their goals for 2005. A separate appendix to issue 13/14 is a major resource in its own right (containing tables of the 2005 management goals and the 2005 campaign goals of the survey's 131 health and social groups that wanted this information attributed).
One of the survey's interesting findings: levels of disease and sickness throughout the world must be far higher than officially reported, simply because so many people go undiagnosed or are not treated for conditions for which they have symptoms. Nearly 75% of the 276 survey respondents said that they were involved in disease-awareness campaigns to overcome the widespread health dangers caused by inappropriate care, levels of public ignorance about disease, and misdiagnoses by doctors.
The survey's replies clearly indicate that the pressure on healthcare systems around the globe seems to have climbed closer to crisis point during 2004. Standards of care and treatment across populations appear to be in decline. The HSCNews survey prompts many questions about whether present healthcare systems are sustainable. The article also reviews past suggestions in HSCNews about what health advocates think are possible ways out of the quagmire.
43 pages; approx 73 weblinks to campaigning groups.
In Focus: Gines Gonzalez Garcia, Argentina's Minister of Health, talks to HSCNews on patient empowerment in his country
The current Health Minister in Argentina, Gines Gonzalez Garcia, appears to be embracing the NGO movement and incorporating it into the country's health reform package. Minister Garcia is using the expertise of campaigners and advocates to help him overcome the vast inequities in healthcare provision in his country. HSCNews interviewed the Health Minister, to ask him why he had adopted such a strategy, and (with NGO support now behind him) what he plans to do next. [This is the third in a series of three interviews with players on the Argentine campaigning scene. Previously, during 2004, HSCNews has covered the activities of two Argentine NGOs–one, a cancer group; the other, an aid development agency.]
3 pages.
Events
[Note that any invitations are for patients, health campaigners or social campaigners only]
- 1st International Scientific Symposium and 7th Greek Conference: "MS–New Clinical Update and Quality of Life." A conference by the Greek Multiple Sclerosis Society and the Multiple Sclerosis International Federation.
Members' News
- DiPex [UK]–empowering patients through the collection and synthesis of experiences of illness.
- European Men's Health Forum [Europe]–how seriously does the EU take gender health issues?
- New Zealand Organisation for Rare Disorders–setting the scene for a New Zealand biobank.
- Patients' Rights Advocacy Waikato–campaigning for the ending of electro-convulsive shock therapy in New Zealand.
New websites
- PDtrials.org [US].
- Baltimore/Washington DC Interstitial Cystitis Support Group [US].
Letters
- Monty Gatehouse of the Parkinson's Disease Society [UK] elaborates on his four-point guidance to policymakers who debate the stem cell issue.
Advertorial
- A request for a national conference in England and Wales on a replacement to the Commission for Patient and Public Involvement in Health (CPPIH)–a proposal endorsed at the December 2004 conference of the Socialist Health Association [UK]. |
cover of HSCNews International,
issue 13/14
Appendix to HSCNews International,
issue 13/14 |
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How to subscribe to HSCNews International
HSCNews International is a free service to the members of the HSCNetwork International.
If you do not work as a campaigner in the fields of health or disability, but you still wish to receive HSCNews International, you can become a subscriber. Please email your request to info@patient-view.com.
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