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Issue 11, HSCNews International (October 2004)
Main article: Corporate money and global campaigns in chronic disease–do campaigners think this a suitable mix? With a special focus on diabetes in the developing world
In 2002, the World Health Organization (WHO) revealed that chronic diseases presented the latest dangerous threat to the health of developing and newly-industrialised nations. That same year, the WHO took another momentous decision, and called upon the private sector to help it curb the rise of these non-communicable diseases (NCDs). Food, pharmaceutical and sports companies have reacted by joining forces with International agencies and local communities to work towards the WHO's goals. But not everybody is happy with the way events are unfolding. Some campaigners have been questioning the motives of industry. Are the companies participating in the WHO's campaigns really behaving philanthropically? Or is industry seizing an opportunity to pursue a hidden agenda and put profits first? To find out what campaigners think about global public-private partnerships on chronic diseases in general, and the WHO's May 2004 'Diabetes Action Now' programme in particular, HSCNews asked 16 key health advocates for their views. The 16 represent grassroots opinion from disparate parts of the globe, including India, Pakistan and Tanzania–countries of concern to the WHO. The 16 groups shared some strong judgments with HSCNews. One of the groups provided a blueprint for successful global public-private partnerships.
32 pages; 35 weblinks to campaigning groups.
In Focus: Clare Rosenfeld
Since being diagnosed with type-1 diabetes at the age of seven, Clare Rosenfeld has actively campaigned on behalf of children and teenagers with diabetes. Ms RosenfeldÕs career as an advocate has been recognised by the American Diabetes Association (ADA), the Daily Points of Light Foundation (a prestigious US organisation representing all manner of volunteers), the International Diabetes Foundation (IDF), and the United Nations. Today, she is fighting for greater representation of children and young people within International organisations such as the UN and the IDF. 4 pages; 3 weblinks to campaigning groups.
Views from the Pacific Rim: Campaigners' opinions on whether to ban the mass advertising of prescription medicines in New Zealand–an HSCNews mini-poll
The New Zealand government is shortly due to decide whether or not to ban direct-to-consumer advertising (DTCA) of prescription medicines. HSCNews conducted a mini-poll of New Zealand and Australian health campaigners, to find out what they think of the proposed ban. Twenty-one key health advocates drawn from a spectrum of specialties participated in the mini-poll. Eleven were based in Australia, and ten in New Zealand. The survey produced some interesting findings. 12 pages; 3 weblinks to campaigning groups.
Events
[Note that any invitations are for patients, health campaigners or social campaigners only]
- 'Adverse Psychiatric Effects of Medicines and Anaesthetics: Preventing Avoidable Harm'; a conference by APRIL [UK].
- 'Medicines for Europe and the World: Setting Priorities and Missing the Point'; a seminar by Health Action International Europe [the Netherlands].
Members' News
- 'People with Down's Syndrome Face Discrimination in Dementia Care'; a press release by the Down's Syndrome Association [UK].
- 'Networking for our Human Rights and Dignity'; a joint conference by the European Network of (ex-) Users and Survivors of Psychiatry [Germany].
- 'Men's health and the European Commission's period of reflection'; a response to the European Commission by the European Men's Health Forum [Belgium].
- Osteoporosis in Men; a report by the International Osteoporosis Foundation [France and Switzerland]. - 'Mental health appears on the EU agenda'; comments on the 2004 European Health Forum Gastein by Mental Health Europe [Belgium].
Publications
- Caring For/Caring About: Women, Home Care, and Unpaid Caregiving; a book by the Canadian Women' Health Network [Canada].
Letters
- After receiving one of HSCNetwork's occasional surveys ['Request from the HSCNetwork to participate in a pilot survey on clinical trial registration', October 2004], Anne Bulow-Olsen of the Migraenikerforbundet (Danish Migraine Association) writes to HSCNews about her group's experience of discovering which clinical trials are available in Denmark.
Advertorial
- 'Passing on information about ongoing clinical trials of interest to patient and disability organisations'; a new initiative by Current Controlled Trials Ltd [UK].
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Issue 10, HSCNews International (September 2004)
Special issue on e-communications in healthcare
Guest editorial: Will IT developments in healthcare provision be relevant to patients and the public? By Ken Kaplan, former professor at Harvard University's Graduate School of Design and Columbia's University's Graduate School of Architecture, Planning and Preservation
In this editorial, Ken Kaplan proposes a techno-based vision for healthcare systems which puts patients and consumers at the centre. "The Internet", says Mr Kaplan, "has been a great leveller, enabling patients to be more active participants in their own healthcare." From their new vantage point, patients and the public can go forward to take greater responsibility for managing their own care. He describes a new era of collaborative medicine, or 'Co-Medicine', in which communication between healthcare providers and patients/consumers occurs via 'a transparent digital translation companion interface'– or, put more simply, an invisible IT system that permits patients and doctors to talk to, and understand, one another better. Mr Kaplan writes about two July 2004 reports that establish the parameters for a wired US healthcare system. He also observes two successful US initiatives in which patients have been put at the centre of care.
9 pages.
Main article: Using e-technologies to interact with patients and the public – a global survey of health campaigners by HSCNetwork International
This article contains the results of a worldwide survey of 333 consumer, patient, disability and statutory organisations, conducted by HSCNetwork between June 2004 and September 2004. The survey looked at the types of communication taking place between health campaigners and their members, patients and the public. The survey examined the extent to which the groups are deploying e-technologies in their communications with their constituents. One striking finding was that nearly all campaigners possess a website and use email when communicating with patients. These e-tools greatly enhance the ability of campaigners to provide services to patients and the public. Examples of other, new, e-inspired activities undertaken by campaigning groups included: building a databank on adverse drug reactions; online recruitment of patients for clinical trials; and virtual advocacy through text messaging and online enrolment of supporters to a cause. Compared to medical professionals, health campaigners appear to be well in the lead when it comes to embracing e-technologies. The survey results suggest that health campaigners are assuming an increasingly important role within healthcare systems as a consequence of their electronic dynamism.
26 pages; approx 160 weblinks to campaigning groups.
In Focus: SATELLIFE–the Global Health Information Network
NGOs, such as SATELLIFFE, have been formed for the explicit purpose of promoting the use of information communication technology (ICT) in the developing world–with dramatic effect. SATELLIFE's eleven discussion forums are potent communication tools, to which numerous campaigners subscribe. A pilot study to wire up the Ugandan healthcare system is described in this interview with Leela McCullough, SATELLIFE's Director of Information Services, and Rebecca Riccio, Director of Programmes External Relations. SATELLIFE has recently become increasingly important to many health NGOs. The interview discusses why.
5 pages; 4 weblinks to campaigning groups, plus weblinks to 7 SATELLIFE forums.
Events
[Note that any invitations are for patients, health campaigners or social campaigners only] - 'Seminar on Bipolar Disorder', by the Richmond Foundation. [Malta]
Research
- 'Drug Development Update', a facility to help recruitment to clinical trials, by the ALS Association [US]
- 'Doctors missing out on important cancer clinical trials information', a press release by Cancer Research UK [UK]
Websites
- Campaigning groups hit the political campaign trail [US, Australia and India]
- ALS Association [US] - Interstitial Cystitis Support Group of Manhattan [US]
- SEIU 250's 'Sutter Corporate Watch' [US]
Letters
- An important Czech-based support centre for people with mental health problems surveys its users on the subject of publicly-available branded medicines information. By Jitka Styblíková, Manager, Vida Centrum [Czech Republic].
- The severe limitation on publicly-available branded medicines information in Portugal. By the board of Liga Portuguesa Contra as Doen?as Reum?ticas [Portugal]
Advertorial
- Bridges.org is running a competition for NGOs, local public-sector organisations, community organisations, and small businesses in South Africa that can propose an innovative ground-level initiative which uses hand-held computers [South Africa]
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Issue 9, HSCNews International (Summer 2004)
European news: Has England just witnessed the premature ending of the world's most ambitious experiment in user-led healthcare restructuring?
Many governments across the world are becoming aware that they will eventually have to involve patients in reform of national healthcare systems. One government has perhaps moved furthest in this way of thinking–Tony Blair's Labour administration in England. Since 2000, the UK Labour Party has created four new agencies to give the idea of patient-centred care real substance in England. The most recently-formed such body is the Commission for Patient and Public Involvement in Health (CPPIH), with its 572 Patient and Public Involvement Forums (PPIFs). This article points out that the Commission and its Forums were controversial entities. They were conceived as tools to help the government change the National Health Service's top-down management culture to a bottom-up one that acted on the views of patients. After a year of operation, the new Commission had barely begun to make an impact–when a bombshell struck the cause of patient empowerment in England. The CPPIH's annual budget of £36 million [$69 million] fell victim to a government cost-cutting exercise in July 2004, and the organisation was abolished. Health campaigners have bemoaned the loss of the CPPIH. They feel that the cut might signal the end of the Labour Party's pledge to devolve healthcare policymaking to local levels. During August 2004, HSCNews asked employees of the CPPIH and volunteers at the PPIFs what they thought about the Government announcement. Martin Rathfelder of the UK Socialist Health Association, and Sally Brearley of the UK patient organisation Health Link, make two proposals in this article as to the possible next steps in user-led healthcare reforms for the English NHS.
15 pages; 7 weblinks to patient or social campaigning groups.
European news: Publicly-available information on prescription medicines in Europe–the results of an HSCNews 'mini-poll'
Direct-to-consumer advertising of prescription medicines is illegal in the EU. But, by order of the European Parliament, the European Commission is currently looking at ways in which public-private partnerships might be used to better publicly disseminate high-quality information on prescription medicines. Today, communication between the pharmaceutical industry and the public does occur. The nature of this communication is largely determined by national law and local trades bodies. To learn more about the current situation in Europe, HSCNews International conducted a 'mini-poll' during August 2004. We asked European health campaigners to describe the types of communication taking place in their countries between pharmaceutical companies and the public in the area of prescription medicines information. Pharma-public communications in the following ten countries are reviewed: Austria; the Czech Republic; Denmark; Finland; France; Germany; Ireland; the Netherlands; Spain; and the UK. The research is supplemented by interviews with representatives of the local media and with health experts. This article shows that many campaigners (patient groups included) are concerned about the unvetted proliferation of prescription medicines information to Europeans. The following campaigners are proposing new actions (albeit differing) to rectify the situation: the Irish Patients' Association; the UK Consumers' Association; and the French Medicines in Europe Forum.
15 pages; 9 weblinks.
Campaigns
- 'Canes for Ethiopia', a campaign by the American Council of the Blind of Minnesota. [US]
News from members of HSCNetwork International
- Barriers to Education, the report on a survey by the Down's Syndrome Association. [UK]
-'AdWatch', a website feature by Healthy Skepticism. [Australia]
Events
[Note that any invitations are for patients, health campaigners or social campaigners only]
- 2004 World Summit by Disabled People's International. [Canada]
- Conference by the International Centre of the Netherlands Institute for Care and Welfare. [Netherlands]
Letters
- 'A US umbrella group specialising in children's health' by the Coalition for Children's Health. [US]
- 'Three US health groups unite around a single campaign' by the Herpes Virus Association. [UK]
- 'An International numbering scheme for clinical trials' by Current Controlled Trials Ltd. [UK]
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Issue 8, HSCNews International (June 2004)
Global news: Regulating children's medicines - what campaigners in the US and Europe are saying
The article paints a backdrop in which children's health worldwide is deteriorating. The article looks at the problems that campaigners are finding with the management of children's medicines, and then concentrates on challenges to the US regulatory framework by US campaigners. Finally, the article examines the attitudes of European campaigners to the European Commission's draft proposals to regulate children's medicines. Amazingly, half or more of all drugs given to children living in North America, Europe or Australasia have never been properly tested for safety or efficacy in the young. The US is the only nation to adopt procedures that govern the clinical testing of children's medicines. Since 1994, the Food and Drug Administration (FDA) has introduced a raft of rules and regulations to control the availability of medicines for paediatric use. The FDA even provides pharmaceutical companies with financial incentives to test all old and new drugs for usefulness in the under-19s. However, although health and social campaigners in America back the regulation of paediatric medicines, they remain unconvinced of the potency of the FDA's regimen. Campaigners also entertain misgivings about the whole notion of testing drugs in children. Global controversies raging around two issues - the use of mental health drugs and vaccines in children - have fuelled the public's desire to see that more is done for children and their medication. In 2004, the European Commission stepped into the debate on children's medication by issuing its own draft proposal for regulating medicinal products for paediatric use. The few groups that are raising their voices on the subject note the need for some important changes to the Commission's proposed legislation. The ethical questions that currently vex US health campaigners have been largely overlooked in Europe. The main imperative in Europe seems to be a focus on getting a legal framework for the testing of children's medicines in position as soon as possible.
32 pages; approx 43 weblinks to patient or social campaigning groups.
In Focus: Asociacion Espanola Contra el Cancer
Issue 8's interview article is with the Director of Communication and Marketing of the large Spanish cancer group, Asociacion Espanola Contra el Cancer (AECC). The Director tells HSCNews International how the AECC reacted when a strategic review by a leading management consultancy found that the AECC's messages were not reaching the Spanish public. 6 pages; 1 weblink.
Campaigns
- The American Cancer Society, the American Diabetes Association and the American Heart Association join forces to launch 'Everyday Choice for a Healthier Life'. [US]
Events
[Note that any invitations are for patients, health campaigners or social campaigners only]
- 'Living with Brain Injury', an awareness kit by the Brain Injury Association of America. [US]
- 2004 National Conference of the National Psoriasis Foundation. [US]
News from members of HSCNetwork International
- The Brain and Spine Foundation is awarded a substantial new grant. [UK]
Publications
- Good Intentions with Side Effects, by the Wemos Foundation, examines 79 public-private partnerships that operate in third-world settings. [Netherlands]
- EQUITY, a new financial newsletter by the World Institute on Disability. [US]
Research
- Rural, Remote and Northern Women's Health, a report by the Centres of Excellence for Women's Health. [Canada]
Letters
- 'A point of clarification' by Alzheimer Europe. [Luxembourg]
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Issue 7, HSCNews International (May 2004)
Global news: Drug patents, pricing and health inequities-the campaign in 2004
The worldwide campaign for affordable medicines has seen vigorous lobbying across several fronts during the first half of 2004. In the battle against high drug prices, for instance, campaigners have already claimed three major victories. In the fight against unreasonable enforcement of intellectual property rights, campaigners' criticism of the US government over its current and previous rounds of trade negotiations have become far noisier in 2004. The Bush Administration's creation of a new pre-authorisation procedure for the approval of anti-HIV/AIDS 'cocktail' pills prior to their widespread distribution in developing countries has been publicly lambasted by Médecins Sans Frontières (MSF). A US and a British researcher have jointly proposed two new, more equitable models for conducting drug R&D. And new NGOs have been formed in the US with a mission to reduce medicines prices.
14 pages; approx 44 weblinks to patient or social campaigning groups.
In Focus: Médecins Sans Frontières (MSF) in Argentina
MSF Argentina has had to face enormous challenges. Almost as soon as it was formed in 2001, the NGO was forced to address the social and health problems caused by the country's sudden economic crisis. The group has also had to tackle an internal question: whether its role as a humanitarian organisation might be compromised by involvement in a highly-politicised trade debate about access to affordable medicines.
5 pages; 2 weblinks.
European news: Mental Health Europe (MHE) produces an action plan against the discriminatory practices that healthcare systems apply to users, ex-users and survivors of psychiatry
An April 2004 meeting in Brussels held by MHE concentrated on the harassment and discrimination of people with psychosocial disability within healthcare services. The group has produced a six-point declaration on how to end such practices. Key initiatives explained at the meeting included: a survey conducted into the various forms of discrimination that healthcare systems show to people with a mental health problem; work in helping journalists write more sensitively about the subject of mental illness; a project that seeks to train users and survivors of psychiatry to provide help to their peers; initiatives that train healthcare workers and professionals; recommendations made by mental health campaigners in response to policy decisions taken at International level; a toolkit designed for users and survivors of psychiatry; the EU-wide campaign behind the launch of the Madrid Declaration; and a workplace health project. (The groups making these presentations were: MHE itself; Pro Mente Salzburg of Austria; FEAFES of Spain; Bundesverband Psychiatrie-Erfahrener e.V. of Germany; Cliëntenbond of the Netherlands; Mind of England and Wales; European Network of (Ex-) Users and Survivors of Psychiatry of Germany; LUCAS research institute of Belgium; European Disability Forum of Belgium; and the Flemish Institute for Health Promotion of Belgium.) In addition, the Employment and Social Affairs Directorate-General of the European Commission talked about its policies to combat the discrimination and harassment of people with a mental health problem. And PatientView used a series of case studies taken from campaigning groups' activities to illustrate the techniques that groups could adopt to increase the effectiveness of their dissemination campaigns.
20 pages; approx 14 weblinks to patient or social campaigning groups.
Campaigning groups' new websites
- Irish Patients' Association. [Ireland]
Campaigning groups' new events
[Note that any invitations are for patients, health campaigners or social campaigners only]
- 2004 Youth Exchange Programme, Active Living Alliance for Canadians with a Disability. [Canada]
- Irish Health Summit by the Federation of Irish Societies. [UK]
- Seminar by SMES-EUROPA. [Belgium]
Campaigning groups' new publications
- A Reason for Hope by the Amyotrophic Lateral Sclerosis Association. [US]
- Journal of Men's Health and Gender by the International Society for Men's Health and Gender. [Austria]
- Coming off Psychiatric Drugs by Peter Lehmann. [Germany]
- New poster campaign by Women and Health Protection. [Canada]
News from members of HSCNetwork International
- Manifesto by People with Arthritis/Rheumatism in Europe. [Europe]
Letters
- 'A point of clarification' by Breast Cancer Action. [US] |
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Issue 6, HSCNews International (April 2004)
Global news: Health campaigners, fundraising and the growth of industry involvement
Revenue is a continual problem for campaigning groups. Fundraising is competitive. Groups that turn to pharma fear their reputations may become sullied in the medical press or by their peers. HSCNews International looked at the annual reports of 68 campaigning groups in Australia, Europe and North America, examining the extent to which the 68 were accessing the pharmaceutical or medical device industries for money. Interviews were conducted with officials at three government departments that regularly finance health-based charities. Health campaigners themselves were interviewed. A mini 'straw poll' was also taken of pharmaceutical companies, to gauge the impact that public criticism of their sponsorship programmes might be having on them. Finally, a 2002 PatientView survey of 137 patient groups across the EU provided data on patient organisations' sources of funding. Putting all these sources of information together, HSCNews International made some startling findings. None of the organisations whose financial records were analysed by HSCNews International revealed how much of their revenue derives from pharmaceutical or medical device companies. But two thirds of campaigners said that they have no alternative to taking pharma money. The highest number of pharmaceutical and medical device companies giving money to any single health and social organisation were the 32 that sponsored the American Diabetes Association (ADA). The most generous corporate giver to campaigning groups worldwide was Johnson & Johnson (ranked by number of mentions in health campaigners' annual reports). Among patient groups in the EU, the Netherlands reported the highest dependency on funds from the pharmaceutical industry. This HSCNews International article discusses campaigning groups' very few viable alternatives to pharmaceutical company funding, and unveils a six-point plan that campaigners can use to allay public fears about their sources of funding.
57 pages; approx 103 weblinks to patient or social campaigning groups.
In Focus: The Taproot Foundation
The Taproot Foundation is built on a simple but inspired idea - the linking of expert volunteers to the unfulfilled needs of nonprofits. Founded in 2001 and based in San Francisco and New York, the Taproot Foundation provides charities with the funding and the professional business tools needed to build robust ongoing concerns.
3 pages.
Campaigning groups' new websites
- Eurordis. [Europe]
- Peer-to-Peer Resource Center. [US]
Campaigning groups' new publications
- Manufacturing Addiction by the British Columbia Centre of Excellence for Women's Health. [Canada]
Events for campaigners
- ArrthymiA Awareness Week. [UK]
- Medical Research Council Event and Reception. [UK]
- The Prostate Cancer Charity Campaign. [UK]
- The Socialist Health Association Meeting. [UK]
Letters
- Dr John Henderson, Consultant, EU Mental Health Working Party. [Scotland] |
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Issue 5, HSCNews International (March 2004)
European news: Health campaigners attack the new EU Clinical Trials Directive
European Union Member States implement the EU Clinical Trials Directive on May 1st 2004. The Directive has the laudable aim of protecting patients who participate in the testing of medicines. However, a number of campaigning groups are joining forces with academic researchers to vehemently lobby against the Directive, which they say favours the pharmaceutical industry over non-industry research. The Directive's critics insist that it will increase bureaucracy, hike costs, and may well snuff out Europe's non-industry clinical trials–thus ultimately depriving patients of important new medicines.
24 pages; approx 28 weblinks to patient, disability and related groups.
In Focus and Members' News: The newly-formed James Lind Alliance
On April 8th 2004, three disparate UK organisations met to found the James Lind Alliance, a campaigning organisation dedicated to encouraging discussions on variations in clinical practice. The new alliance will use patient-clinician partnerships to confront treatment uncertainties. HSCNews International interviews Sir Iain Chalmers, one of the Alliance's founders, and a leading advocate on behalf of non-industry clinical trials.
7 pages; approx 4 weblinks to patient, disability and related groups.
Global news: Medicines and mental health–what campaigners are saying
(Part II of a two-part series on campaigners' activities in the area of mental healthcare)
Campaigners in the field of mental health are asking governments to give patients with a mental health problem access to new, more effective medicines and a greater range of non-medical care. This article looks at the campaigns underway in three mental health conditions–dementia, depression, and bipolar disorder/schizophrenia. Also analysed is the controversy over antidepressants (SSRIs–selective serotonin reuptake inhibitors). In addition, the article turns to the government-appointed agencies charged with developing clinical protocols in the US, England and Wales, Scotland, and Europe, and examines their actions in the field of mental healthcare. The links that the National Institute of Clinical Excellence (NICE) maintains with campaigning groups are explained.
31 pages; approx 136 weblinks to patient, disability and related groups.
Campaigning groups' new websites
The Headstrong website (still under construction) is part of a striking new multi-media information resource from the Brain and Spine Foundation. [UK] |
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Issue 4, HSCNews International (February 2004)
Global news: Mental health campaigning groups
(part I) the policy issues behind the fight for reform
New medicines and psychotherapies are available for even the severest mental health conditions. Yet state-run healthcare providers do not readily make such treatments available to patients. Mental health campaigning groups in the US and the UK have therefore banded together into several huge coalitions to pressurise policymakers into reforming outdated mental healthcare systems.
59 pages; approx no. of weblinks to patient, disability and related groups–43 UK; 15 US; 13 other countries.
Interview article: Stamp Out Stigma–battling stigma for a decade
Interview with the Founder and Director of the US campaigning group, Stamp Out Stigma. A decade ago, SOS correctly identified fear of stigmatisation as being responsible for stopping large numbers of people with mental health problems from coming forward for much-needed treatment. SOS has been campaigning to make treatment more accessible.
6 pages; approx 5 weblinks to patient, disability and related groups.
Campaigning groups' new websites
The website of the Mental After Care Association (Maca) took years to build. [UK]
The Mental Health Care website is a joint initiative by Rethink, the Institute of Psychiatry, and the South London and Maudsley NHS Trust. [UK]
The Rethink Carers' website offers information to the carers of people with a mental health problem. [UK] |
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Issue 3, HSCNews International (January 2004)
European news: Publicly-available information on prescription medicines: the prognosis for 2004
In 2004, European health campaigners are set for further wrangling on the issue of publicly-available prescription medicines information. Arguments will centre on who should supply the information, and the levels of policing required. In the meantime, some organisations are taking matters into their own hands by developing new methods of providing patients with the information they desire about treatments.
29 pages; approx 45 weblinks to patient, disability and related groups.
Interview article: Active Citizenship Network's European Charter of Patients' Rights
Interview with senior executives of the Italian group. ACN is running perhaps the largest and most ambitious healthcare project undertaken by an advocacy group–an attempt to get a 14-point charter of patients' rights incorporated in all European countries during 2004.
13 pages; approx 12 weblinks to patient, disability and related groups.
News from members of the Health and Social Campaigners' Network
Alzheimer's Australia calls for new treatments for dementia (set to become Australia's number-one cause of disability by 2040). [Australia]
Campaigning groups' new websites
Africa Action spent three months designing their new website, which contains a number of helpful facilities – including a toolkit to help activists mobilise a community, a newsroom, and analysis. [US]
Campaigning groups' original research
In a project funded by the European Commission, Alzheimer Europe completes new research, classifying the various types of rare dementias. The result is a document that is valuable to patients and professionals. [Luxembourg] |
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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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