ACT for Meningitis (Galway, Ireland)

Offering meningitis awareness and support across Ireland, ACT for Meningitis was set up in 2011 after its CEO, Siobhan, lost her daughter Aoibhe to the disease. Read Siobhan and Noel’s Story.

The organisation provides a range of educational resources, awareness talks and support services for individuals and families affected by meningitis, including counselling and play therapy.

For more information, contact Siobhan Carroll on +353 91 782 828, email ACT for Meningitis or visit the ACT for Meningitis website.

 

Antimeningokok (Prague, Czech Republic)

Andrea Brzobohata founded Antimeningokok in 2012 after as a result of how own personal experience of meningococcal meningitis.

Andrea lost both her legs to meningitis C and after years of rehabilitation decided to raise awareness of meningitis in the Czech Republic, and to help other survivors and their families to cope with the after-effects of the disease.

Antimeningokok provides information and organises regular events to educate people about the disease. For more information contact Andrea on
+420 602 765 685, email Antimeningokok, or visit their website.

  

Asociación Española contra la Meningitis (Spain)

Asociación Española contra la Meningitis was established in 2016 by volunteers and employees of the Fundación Irene Megías Contra la Meningitis (FIMM) after its closure due to financial difficulties. AEM is very proud to continue the hard work of being THE voice against meningitis in Spain. The support of the Scientific Committee Advisory Group of the FIMM has been fundamental in this new phase.

AEM provides information about meningitis symptoms to raise awareness and promotes vaccinations throughout Spain.

Visit the Asociación Española contra la Meningitis on Facebook and Twitter for more information.

 

Association Méningite Arabe (Headquartered in Belgium)
Arabian Meningitis Association

Association Méningite Arabe (AMA) was established in 2012 by Philippe Doms, founder of BMOmeningitis in Belgium. The organisation was created to provide support for individuals and families affected by meningitis and to advocate for prevention by seeking access to meningitis preventing vaccines. 

The organisation exists to support the Arab world where they visit hospitals, schools and work closely with medical professionals in all their activities.

Visit the AMA website for more information.  

 

Association Petit Ange - Ensemble contre la Méningite (France)
Little Angel Association - Together Against Meningitis

Association Petit Ange was established in 2007 to help, inform, encourage discussion and engage people in meningitis with the hope to raise awareness of the disease across France. Specifically, the organisation works to:

  • Help families affected by meningitis and often the loss of a child.
  • Inform people about meningitis, what causes the disease, the possible outcomes and ways to prevent the disease.
  • Encourage discussion about meningitis by sharing personal stories and photos through their Facebook page.
  • Engage people to build awareness of the disease at events and through the media.

Visit Association Petit Ange’s website for more information about the organisation.

  

Barnplantorna (Gothenburg, Sweden)

Barnplantorna is an organisation who supports people with hearing loss, many of whom may have resulted from pneumococcal meningitis.

Barnplantorna encourage early hearing tests, provide information materials, as well as offering a range of services to parents and professionals in child care and education. 

In 2007 Barnplantorna successfully lobbied for the pneumococcal vaccine to be included on the National Immunisation Schedule in Sweden.

Visit the Barnplantorna website for more information about this member organisation.

 

BMOmeningitis (Belgium)

After the loss of their five-and-a-half-month old daughter Jadore to meningitis and septicaemia in June 2008, Philippe and his family were left with many questions but no answers. As a result they established BMOmeningitis (Belgische Meningitis Organisatie, Belgian Meningitis Organisation) a few months later to raise awareness of meningitis in Belgium and to advocate for prevention.

Committed to making all Belgian’s aware of meningitis, BMOmeningitis provides information in schools and childcare centres and also provides emotional and financial support to meningitis victims and their families as well as supporting research into disease prevention.

BMOmeningitis also believes it is important to work with other organisations ‘because together we are stronger’.

Visit the BMOmeningitis website for more information.

 

Care and Development Centre (CADEC) (Nigeria)

Care and Development Centre (CADEC), a Nigerian Non-Governmental Organisation, was set up in 2011. Their mission is to be a prominent Non-Governmental Organisation that empowers vulnerable people through their participatory approach.

CADEC focuses on programs that are geared towards wealth creation, social justice, sexualities and health education. Through education and participatory approaches, their initiatives aim to create and enhance sustainable environments, livelihood, self-esteem, economic empowerment, community development, and good governance.

In the area of health education, CADEC takes a participatory approach and works in the community to educate its members on preventive health issues. In line with this, CADEC is actively promoting the uptake of vaccines and immunization services in the Nigerian community.

For more information, call Rhoda Omoile on +23408094826044 or email CADEC.

 

Caritas Nigeria (Nigeria) 

Catholic Caritas Foundation of Nigeria (Caritas Nigeria) was established in 2010 as a development agency of the Catholic Church in Nigeria. With focus on six key thematic areas namely Health, Agriculture, Education, Good governance, Environment/Emergency Response and Institutional Capacity-strengthening and Anti-Human Trafficking/Forced Migration. Their mission is to stimulate & drive development into every segment of the ever-complex and rapidly growing Nigerian society.

Caritas Nigeria's health portfolio is robust and covers broadly communicable and non-communicable diseases including malaria, HIV/AIDS, hepatitis and meningitis. Caritas Nigeria has within the last six years implemented several community-based development interventions (across the different program areas of healthcare), impacting millions of lives and families.  They are currently in partnership with 1376 faith-based health facilities and 375 schools scattered spread across very hard-to-reach and under-served communities in the country.

During the outbreak of the meningitis in Nigeria at the start of 2017 which claimed over 800 lives, Caritas Nigeria launched a very effective campaign against meningitis where over 3000 persons across the country were immunized. This was combined with massive public awareness and advocacy on meningitis targeting various predisposed communities (churches, market places, villages etc.). The machinery for this has been adopted and incorporated into the organizations programming.

For more information, please visit the Caritas website or email.

 

Concern Health Education  Project (Ghana)

Concern Health Education Project is  a  registered  NGO  and  works  in  the  area  of  Health advocacy in Ghana. Founded by Isaac Ampomah in 2004, CHEP now works with over 500 target groups across Ghana to raise awareness of Hepatitis B, Meningitis and TB. CHEP works at a grassroots level, empowering the community through the engagement of volunteers (both national and international) in their projects. They also engage policy makers and policy enforcers in dialogue with the communities and catalyse participatory approaches on health issues, environment, human rights and good governance.

Within  the  Health   Systems  Strengthening,  CHEP works  to advocate  against weaknesses  in  the  district  health  services   and is  currently  working  on GAVI’s HSS Immunization support program in  Ghana. This involves creating  demand  for  immunization  services  in  communities  of  Ghana  as a  means  to  increase  community  voices  on  the  importance  of  immunization.

For more information, call on +233 24 304 4732, email the project, or visit the Concern Health Education Project Facebook Page. There are also several videos on Youtube about the project.

 

Fundacja Aby zyc (Krakow, Poland)

Fundacja Aby zyc (‘Foundation to Live’) was established in 2007 after the co-founder’s daughter contacted meningococcal C. It provides information on ways to prevent, diagnose and treat life-threatening diseases that affect the nervous system. Read Andrez’s Story.

The organisation delivers educational programs and campaigns across Poland and provides funding for vaccines to those who cannot afford them. It also helps with the rehabilitation of children after neuro-infections.

For more information, contact Anna Szczerbińska on +48 661 397 839, email Anna or visit the Fundacja Aby zyc website.

  

Gemeinsam gegen Meningokokken (Germany)
Together against Meningitis

Gemeinsam gegen Meningokokken creates awareness of bacterial meningitis amongst the public and health care professionals of Germany, providing them with information about the disease.

The group are committed to providing support to those who are affected by the disease.

Visit the Gemeinsam gegen Meningokokken website for more information.

 

Group B Strep Support (GBSS) (UK)

Group B Strep Support (GBSS) was founded in 1996 and is the only UK charity dedicated to eradicating group B Strep infections, including meningitis, in babies. 

GBSS supports families affected by group B Strep and their health professionals by providing relevant, evidence-based information and education about Strep B. Their aim is to ensure that every pregnant woman is informed about group B Strep as a routine part of her antenatal care, and offered the opportunity to have a test for GBS carriage late in pregnancy. 

For more information, contact Jane Plumb on +44 144 441 6176, email GBSS or visit the Group B Strep Support website.

 

Meningitis Association of South Africa (Cape Town, South Africa)

The Meningitis Association of South Africa was established to raise awareness of meningitis and other infections of the central nervous system throughout South Africa.

The association uses education systems and research to provide support and education to patients and families, increase awareness of meningitis, promote more information to healthcare professionals, and to raise funds to improve diagnosis, treatment, and prevention of meningitis.

Visit the Meningitis Association of South Africa website for more information about this member organisation.

  

Méningites France – Association Audrey (Écouflant, France)

Founded in 2000, Association Audrey was formed following the death of the Voisine family’s 12-year-old daughter to inform people about the first signs and symptoms of the disease and its serious consequences. Read Jimmy and Véronique's Story.

Committed to raising awareness of meningitis, the organisation now known as Méningites France – Association Audrey provides training, events, publications and support for other parents and families in France and beyond.

For more information, contact Jimmy Voisine on +33 02 41 37 82 46, email Méningites France – Association Audrey or visit the Méningites France – Association Audrey website.

  

Meningitis Now (Stroud, UK)

Meningitis Now is a new charity, with almost 30 years’ experience, formed in October 2013 by bringing together Meningitis UK and the Meningitis Trust, the founders of the meningitis movement in the UK. It’s a new name but the charity has the same goals.

Meningitis Now is leading the fight against meningitis in the UK. Its vision is a future where no one in the UK loses their life to meningitis and everyone affected gets the support they need to rebuild their lives.

The charity provides a powerful, united voice for individuals, families, communities, experts and professionals who know just how devastating meningitis can be.

The charity has six priorities:

  1. Supporting prevention. To support research that finds new, and enhances existing, vaccines to save lives and prevent disability. Campaigning for the introduction of licensed vaccines as soon as they become available.
  2. Making sure no one faces meningitis alone. Over half a million people living in the UK have had meningitis and many thousands of families have been left facing a future without a loved one. Without vaccines to protect against all types, meningitis continues to strike, devastating families across the UK. The charity will continue to reach out to everyone affected.
  3. Listen and respond to the needs of people affected. Helping to rebuild futures, listening and responding positively to anyone affected.
  4. Reducing the impact of meningitis and fighting for the rights of those affected. Awareness is key – rapid identification of the disease through better education has always been a priority.
  5. Raising the funds to deliver its plans. The charity receives no central government funding and needs to raise £4 million each year to carry out its work.
  6. Being a united, focused and effective organisation. Being inspired by the individuals and families it works with.

For more information about Meningitis Now, visit their website, contact them via email or call their 24 hour UK helpline: +44 0808 80 10 388.

 

Meningitis Research Foundation (Bristol, UK)

Established in 1989, the Meningitis Research Foundation (MRF) is the UK’s largest meningitis research charity. It was set up by a group of parents whose children had been affected by meningitis or septicaemia

MRF funds research into prevention, detection and treatment of the diseases, promotes education and awareness amongst health professionals and the public, and provides support to those affected. It has funded more than 130 research projects worth nearly £17 million, developed widely used guidelines for treating meningitis and septicaemia in hospitals and a prevention guideline to reduce cases in newborn babies. It also launched the world’s first Meningococcus Genome Library as a free online resource for scientists around the globe.

MRF’s Counting the Cost campaign established the true costs on society of those seriously disabled by meningitis – helping to influence the likely introduction of a MenB vaccine in the UK in the near future.

For more information, contact Vinny Smith on 0333 405 6262, email MRF or visit the Meningitis Research Foundation website.

 

Movimento Italiano Genitori Onlus - MOIGE (Rome, Italy)

Movimento Italiano Genitori Onlus is a non-governmental organisation that works to protect and inform parents and families. Currently working with more than 30,000 parents across 30 provinces, it was established in 1997 by a small group of parents who found that they lacked information about parenthood.

MOIGE delivers a diverse range of projects for children, parents and grandparents in schools, cities and malls across Italy.

For more information, contact Maria Rita Munizzi on +39 06 32 36 943, email MOIGE or visit the MOIGE website.

 

Mustard Vision For Sustainable Development (MUVSUD) (Cameroon)

Mustard Vision For Sustainable Development is a non-political and non-profit organisation working towards the development of Cameroon society in key areas including agriculture, education, health, gender and environment, to name a few. They are focused and determined to do the maximum amount possible within their capacity and resources to raise local and international awareness by adopting strategies to deal with the aforementioned areas, of which meningitis is included. With meningitis being one of MUVSUD's focus areas, they are striving to achieve their vision of a future where no one in Cameroon loses their life to meningitis and everyone affected gets the support they need to rebuild their lives. For more information, email Elangwe Samuel or call +237677876040.

 

NAHLAS (Czech Republic)

Obcanské sdružení Nahlas is a non-governmental, non-profit organisation established in the Czech Republic in order to raise awareness about invasive pneumococcal disease (IPD), its treatment, and prevention.

The organisation has successfully lobbied the Czech government for a free pneumococcal vaccine to be available for all young children. The founders´ son survived pneumococcal meningitis because his parents were aware of the symptoms and sought medical help quickly.

NAHLAS works as a centre for information exchange among those who have survived IPD as well as anyone who may need them. The organisation also provides counselling services for families who lost a child due to IPD or who are coping with after-effects such as deafness, movement disability, etc.

Visit the NAHLAS website for more information about this member organisation.  

 

Netherlandse Meningitis Stichting (NMS) (Netherlands)

The Netherlandse Meningitis Stichting (NMS) is an organisation run by volunteers to support families who have experienced meningitis, encephalitis and septicaemia.

The NMS is dedicated to sharing information and experiences via its website, by distributing brochures, and delivering presentations to medical professionals and the general public to raise awareness of these diseases. They also offer a 24-hour telephone service to support those in an emergency situation.

By giving small grants to science graduates, the NMS supports research into meningitis prevention, diagnosis, treatment and the after-effects of the disease.

Visit the Nederlandse Meningitis Stichting website for more information.

 

National Committee Against Meningitis (Italy)

In 2011, the parents of two children who passed away from meningococcal disease established the National Committee Against Meningitis. The committee is the first advocacy group in Italy who focuses only on meningitis.

The National Committee aims to fight meningitis across Italy by providing information about the signs, symptoms and risks of meningitis as well as information about how to prevent this devastating disease.  The committee also provides support to the lives affected by meningitis.

Visit the National Committee Against Meningitis website for more information about this member organisation.

  

Parents of Disabled Children Association of Malawi (PODCAM) (Malawi)

PODCAM is a non-profit organisation that has over 16,200 members across Malawi. PODCAM seeks to assist children with disabilities, irrespective of age, to maximise their potential as individuals and determine every aspect of their lives. This is achieved through empowering the parents of children with disabilities, conducting civic education, and mitigating the impact of abuse among children with disabilities.

The goal of the organisation is to create a society that will promote the rights, survival, protection, and development of the children with various disabilities. PODCAM is also educating the Malawian community on the causes, symptoms and treatments associated with meningitis.

For more information, call Mirriam Namanja on +265993039057, email PODCAM or see their website.

 

Real Life Foundation (Ghana)

Real Life Foundation (RELIF) is a registered non-profit and a non-governmental organisation that was formed in 2009 by a group of concerned citizens who were touched by the plight of the underserved and vulnerable people in the communities.

Real Life Foundation, (RELIF) works to raise awareness of meningitis, provides support to those who are suffering meningitis, and helps to build the capacity of various individuals. 

For more information, email Linda Dzifa Ahado.

 

The UK Sepsis Trust

The UK Sepsis Trust seeks to save lives and improve outcomes for survivors of sepsis by instigating political change, educating healthcare professionals, raising public awareness and providing support for those affected by this devastating condition. UKST’s critical expertise is based in the charity’s grassroots origins – their doctors and nurses have front line, first-hand experience of the sepsis problem; their passion is born of a uniquely comprehensive understanding of what needs to be done.

The urgent need to improve sepsis care in the UK drives the team forward as they continue to work in hospitals while volunteering their time to advance the sepsis agenda.

For more information, email: info@sepsistrust.org, or visit the website: http://sepsistrust.org/

 

Women Advocates for Vaccine Access (Nigeria)

Women Advocates for Vaccine Access (WAVA), is a coalition of women-focused Civil Society Organizations (CSOs) in Nigeria advocating for increased health access, improved routine immunization uptake and sustainable primary healthcare financing in Nigeria. WAVA is a registered entity with the Corporate Affairs Commission (CAC) of Nigeria. As at April 2017, there were 47 member organizations in 19 states, spread across all 6 geopolitical zones in the country. Together, WAVA members and WAVA Champions envision a world where individuals, irrespective of their gender, creed, value or physical attributes have unhindered access to vaccination to improve their well-being and advance the collective good. 

With a rich network of collaborators and a national profile, WAVA’s strategic approach is three pronged:  first we mobilize additional voices as vaccine advocates; second, we to train, network and coordinate Champions and organisations to be effective advocates; third we provide advocates with, or link them to resources they need to be successful - such as, evidence, technical support and small grants.

Following the recent outbreak of Meningitis C in Nigeria, which has claimed over 1000 lives as at May 12, 2017, WAVA stepped into the forefront of information dissemination. We released a press statement calling for funding and increased uptake of the Meningitis C vaccine. Acknowledged by the Federal Ministry of Health (FMoH), the press statement also commended the quick response and synergy among the various government agencies and partners in managing the cerebrospinal meningitis (CSM) outbreak.

WAVA remains committed to building and strengthening partnerships across Nigeria, Africa and beyond, to promote evidence-based interventions that reduce vaccine preventable diseases like meningitis. 

For more information on WAVA, visit www.wavang.org  or send an email to info@wavang.org.  

 

   

 

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