Carenity engages with patient support groups

Breast cancer and leukemia

The association, A Chacun son Everest ! (Everyone has their Everest!), welcomes children impacted by cancer or leukemia and women in remission of breast cancer to outdoor activities in Savoie.
The goal: To help them through the delicate phase of post-cancer so they can regain their confidence, joy of living and a new momentum in life.

For the event of Pink October, Carenity met with the mountaineer and founder of the association, Christine Janin. After a passionate exchange, the team shared this meeting with the members of Carenity. The members were touched by Christine’s story and her beautiful organisation. The engagement of subscribers from Carenity’s Facebook also generated a donation to the charity from Carenity.

Acromegaly

Acromégales, pas seulement (Acromegaly, not only) is an association that unites people with acromegaly or carriers of the mutant gene AIP. It also brings together the parents or family members of the patient.
The goal: To take care of the people suffering from this rare disease, to increase public knowledge about the illness, to improve the care practices and to create a dialogue with healthcare professionals.

Acromegaly, pas seulement, is a long-time partner of Carenity, who helped with the creation of the organisation. Together they have conducted several studies of this rare disease. Carenity has also given a donation to the association to help it grow and continue its work.

Ankylosing Spondylitis, Inflammatory Rheumatism

The organisation, Action Contre les Spondylarthropathies (Action Against Spondylarthropathies) has been supporting people with chronic inflammatory rheumatism for thirty years.
The goal: To encourage patients to take up an appropriate sport or to meet at the numerous SpondyCafés in the region.

Carenity has made its members aware of the different actions carried out by ACS-France in both France and the Réunion.

Kidney diseases

L’Association pour l’Information et la Recherche les maladies Rénales Génétiques (The Association for Research and Information of Genetic Renal Diseases) is a long-time partner of Carenity.
The goal: To spread knowledge about genetic kidney diseases, to encourage the donation of organs and kidney transplants, to take care of patients and their close ones and to support research into kidney diseases.

L’AIRG is very active on the Carenity platform and has contributed immensely to studies carried out by Carenity.

Neurofibromatosis and Von Recklinghausen disease

L’ANR stands for the Association Neurofibromatoses et Recklinghausen (Association of Neurofibromatosis and Recklinghausen).
The goal: To listen to patients and their close ones, to direct them to medical teams and support research by participating in projects and financing studies.

Carenity presented the ANR to the neurofibromatosis community in order to help those impacted by this rare disease which is often isolating. The ANR have also participated in studies with Carenity to advance the knowledge about neurofibromatosis.

Neuroendocrine tumors

L’Association de Patients porteurs de Tumeurs Endocrines Diverses (The Association of Carriers of Diverse Neuroendocrine Tumors) was created to give a voice to the patients of neuroendocrine tumors.
The goal: To allow exchange between patients, to avoid isolation of sufferers, to inform of the progress of treatments and to promote research.

The APTED have contributed to a study led by Carenity about the care of patients with a neuroendocrine tumor. Carenity went on to present the results of the study during the NETathlon, a weekend of physical activity and exchanges for the patients, organised in June 2017 by APTED.

Obesity

Le Collectif National des Associations d’Obèses (The National Collective of Obesity Associations) brings together organisations in France and overseas.

The goal: To provide information to different organisations and the general public, to be a point of reference/spokesman to supervisory bodies, to fight against the spread of obesity, to work in partnership with different scientific organisations and to make the agro-food industry responsible for the ingredients in their products and their advertising messages.

Carenity informs their members when the CNAO are hosting events, such as The European Obesity Day.

Epstein-Barr virus

DetectEBV is a participatory movement whose mission is to show the reality of the Epstein-Barr virus and its impact on the health of many people through 3 pillars: those who study it (researchers), those who track it down (caregivers) and those who live with it (patients). These three pillars reflect the movement's ambition to "understand, detect and live with the Epstein-Barr virus".

Carenity presented the collective and its missions to Carenity members through an interview with Céline PERAT, Detect EBV project coordinator.

Eurocarers brings together 75 carers’ organisations as well as relevant universities & research institutes from 26 countries. Our network works to ensure that care is valued, and unpaid care is recognized as central to the sustainability of health and long-term care systems. Eurocarers acts as a voice for informal carers, irrespective of their age or the particular health and care need of the person they are caring for.

Carenity conducted a major study with them to better understand the Covid-19 pandemic from the perspective of patients with chronic diseases.

Cardiovascular Illnesses

La Fédération Française de Cardiologie (The French Federation of Cardiology) has been fighting against cardiovascular diseases for fifty years, a cause of about 150,000 deaths a year in France.
The goal: To reduce the number of deaths and accidents caused by cardiovascular illnesses by developing campaigns of prevention, to care for patients suffering from cardiovascular problems and to help in research.

Carenity put in place a digital campaign to support and spread awareness for MaFedeCardio. This site is dedicated to cardiovascular illnesses; it provides personalised advice to sufferers, appointments with cardiologists and other services to fight against stress and to promote a better quality of life.

Chronic Obstructive Pulmonary Disease (COPD)

The association France BPCO is a federation of patients and a non-profit organisation, created by Philippe Poncet, who is affected by COPD.
The goal: To raise awareness among the general public about the burden that the COPD can pose and to make patient voices heard by public authorities and health professionals.

Carenity has made its members aware of the initiatives taken by France BPCO.

Ovarian Cancer

The association IMAGYN (Initiative for Patients Affected by GYNaecological Cancers) is a non-profit organisation created in 2014 by a dozen patients living with gynaecological cancers.
The goal: To raise awareness, share, support and inform patients, their families, relatives and anyone concerned by all aspects of gynaecological diseases (prevention, notification, follow-up, care during and after treatment), and to help advance research.

Carenity collaborated with them on a study. 90% of patients affected by ovarian cancer expressed a need for nutritional support and unfortunately, only half (44%) actually had access to it. These figures speak volumes about the usefulness of developing relevant tools such as Mon Carnet Nutrition (My Nutrition Diary) to help patients in their daily lives.

Neurofibromatosis type 1

The association Kokcinelo fight against neurofibromatosis type 1 which is also known as the Von Recklinghausen disease (a genetically rare disease).
The goal: To support patients and fight against discrimination caused by the disease. Kokcinelo take part in sports, cultural and informative events.

Carenity introduced the association to their members who were impacted by NF1 and who would be interested in their various events. Kokcinelo also participated in a study for future treatments for cutaneous neurofibromas.

The Compagnie des Aidants aims to develop mutual aid and exchanges between caregivers. Thanks to various tools, it brings together and federates a community of caregivers, whose role is to be better known by society as a whole.

Carenity conducted a major study with them to better understand the Covid-19 pandemic from the perspective of patients with chronic diseases.

Multiple Sclerosis

La Ligue Française contre la Sclérose en Plaques (The French League against Multiple Sclerosis) works for the benefit of sufferers of multiple sclerosis at a regional, national and international level.
The goal: To provide clear and precise information about multiple sclerosis.

Carenity led a study with the association. Amongst more than 400 patients and their close ones, 70% expressed their dissatisfaction with the costs of the treatments. This situation was presented to deputies in October 2007. Their mission is to put in place actions to reduce the burden caused by the disease and improve the quality of life for patients and their families.

Grafts, transplants and dialysis

Montagnes d’espoir (Mountains of Hope) help people who are on dialysis or have had a transplant.
The goal: To encourage sufferers to live their lives and their passions despite their illness, to support patients within their own projects and also to raise awareness about organ donations.

The whole Carenity team had the luck to meet the founder of the organisation, Emmanuel Gastaud, as well as one of his volunteers, Annelise Cottenet. After this meeting, Montagnes d’Espoir helped Carenity to promote their study concerning grafts and transplants. Carenity raised awareness to their members of the events held by the association and also supported them in their organisation of Relais de l’espoir at the Cagnes-sur-Mer triathlon by becoming their official sponsor.

Osteoarthritis

OAFI is the Osteoarthritis Foundation International, the first and only foundation exclusively for people with osteoarthritis worldwide.

The Foundation was created in Barcelona in October 2016 with the aim of leading the fight against osteoarthritis by promoting education, prevention, treatment and research into everything related to joint health and offering solutions to people suffering from this pathology so that they can feel supported, alleviate their pain and improve their quality of life.

Carenity presented to their members the main results of the CAVIPA survey, conducted by OAFI.
The aim of this study was to better understand the perception of the quality of life of osteoarthritis patients.

Migraine

Shades for Migraine is a global social media awareness campaign led by The Association of Migraine Disorders. Established in 2017, it aims to spread awareness and education about migraine disease, reduce stigma, and support the 1 billion people affected worldwide.

Carenity collaborated with Shades for Migraine to publish articles and share testimonials, aiming to raise awareness about the debilitating nature of migraine disease.

Our joint efforts focus on educating the public, encouraging people to share their migraine stories, and providing educational resources about this invisible yet impactful disease.

Cancer

The Aunt Sister Project is a nonprofit organization that provides health and wellness programs exclusively to cancer survivors, in any phase of the cancer diagnosis. Established in the US in 2020 by Ashley Lentz, ASP assists cancer patients regardless of their physical level, financial situation, or preferred method of treatment.

Carenity and The Aunt Sister Project work together to provide helpful information to cancer patients, interested in increasing their mobility and physical state.

Carenity introduced the association and its missions to Carenity members through an interview with Ashley, Founder of The Aunt Sister Project.

Liver disease, grafts and liver transplantation

The organisation Transhépate is present in nearly all the centres for liver transplantations and includes all the major regional associations of liver transplant recipients.

The goal: To raise awareness of the risks of serious liver failure but also the importance of organ donation, to defend the interests of patients with serious liver failure or liver transplants and to provide support, both moral and psychological, to the transplanted, future transplant patients and those suffering from liver failure as well as their close ones.

Carenity raised awareness to the members in their liver disease and transplant communities to the ongoing projects by Transhépate.