The Alliance — A pact for living
The associations that give it a voice
A group of associations of people with chronic conditions, coordinated by Health Engine, that have joined forces to make their voice heard and set the priorities of an effective programme against chronic pain.
Members of the Alliance
The 14 associations
Health Engine ETS Alliance coordination
Teresa Petrangolini
President — Health Engine ETS
Coordinator of the Alliance and President of Health Engine ETS, a project incubator for the third sector working in health advocacy.
FAIS Incontinence and ostomy
Pier Raffaele Spena
President — FAIS ODV
Federation of associations of people with incontinence and ostomies. Works to break down stigma and guarantee access to medical supplies and therapies.
AI.Ce. Migraine and headache
Alessandra Sorrentino
President — Alleanza Cefalalgici AI.Ce.
The national point of reference for people with migraine and chronic headache, conditions that are often invisible but highly disabling.
ANMAR Rheumatic diseases
Silvia Tonolo
President — ANMAR
National association of people with rheumatic diseases. Active across Italy to guarantee rights and access to care for all rheumatic diseases.
La Voce di una Endometriosis
Valeria Mento
President — La Voce di una è la voce di tutte
A voluntary organisation giving a voice to women with endometriosis, a chronic and very painful condition that is still too often diagnosed late.
Libellula Libera Fibromyalgia
Francesco Piccerillo
President — Libellula Libera APS
Fibromyalgia association working for the institutional recognition of fibromyalgia as a disabling disease.
APIAFCO Psoriasis and psoriatic arthritis
Valeria Corazza
President — APIAFCO
Italian association of people with psoriasis, friends of the Corazza Foundation. Support and advocacy for dermatology and rheumatology patients.
Gruppo LES Systemic lupus erythematosus
Mercedes Callori
President — Gruppo LES Italiano
A voluntary organisation for people with lupus, a systemic autoimmune disease often accompanied by widespread chronic pain and fatigue.
FAND Diabetes
Manuela Bertaggia
President — FAND
Italian diabetes association, present across the country with local branches supporting people with diabetes and their families.
APMARR Rheumatic and rare diseases
Antonella Celano
President — APMARR
National association of people with rheumatic and rare diseases. Promotes patient protection and integrated care.
AISM Multiple sclerosis
Paolo Bandiera
Director of General Affairs and Institutional Relations — AISM
Italian Multiple Sclerosis Association. For over 50 years it has worked to improve the quality of life of people with MS and to promote research.
AMICI Inflammatory bowel disease
Mara Pellizzari
President — AMICI Italia
Association for diseases of the digestive system. Represents people with Crohn's disease and ulcerative colitis in Italy.
Diabete Italia Diabetes
Fabiano Marra
President — Diabete Italia Rete Associativa ODV
A network bringing together the main Italian organisations working on diabetes, to protect and care for people with diabetes.
FIAO Obesity
Iris Zani
President — FIAO
Federation of associations of people with obesity. Represents and coordinates patient associations for obesity at national level.
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New members
Join the Alliance
Do you represent patients living with chronic pain? The Alliance is open to new associations that share its mission.
The pain manifesto
A group of associations of people with chronic diseases, coordinated by Health Engine, have decided to join forces to make their voice heard and to set out the priorities of an effective programme against chronic pain.
Information
On chronic pain, information is not adequately structured, follows no defined programme and lacks a single direction. People who suffer do not know how to move, and healthcare staff cannot always guide patients. Associations could play a role in developing information that can finally help and guide citizens.
Implementation and update of the LEA
To date, pain is not assessed in the LEA Guarantee System. Implementation is uneven across the country, and patient care appears fragmented and heterogeneous. The Alliance intends to be an active party with the Ministry of Health for an updated review of the state of implementation.
Training
There is a training gap on chronic pain care among important professional groups such as family doctors and some specialists. The Alliance aims to promote new training programmes and courses in which the evidence produced by patients is also study material.
Support for people
On chronic pain, associations would need to work together to build an information and support platform, helped by new digital tools. The Alliance proposes a common project that becomes an orientation service for patients, supporting their problems.
No to waiting lists
Waiting lists for diagnostics and specialist visits are a major obstacle. Many pay for the service out of pocket to be seen in time. The Alliance considers this a priority, and will work to make every pathway to care simpler and harmonised.
Fighting stigma
A cultural stigma still minimises the impact of pain. It is wrongly considered a lesser, relative ailment. The Alliance will fight this stigma by talking about chronic pain to people, giving it a face through simple communication within everyone's reach.
Professional network
Clinical networks are extremely uneven across the country and severely understaffed. The associations reaffirm the need for a strong link between family doctors, specialists, pain therapists, nurses, pharmacists, physiotherapists and psychologists.
Funding and its proper use
Funds are never sufficient and the way they are allocated often does not work. The associations will work both for greater attention to quantifying the funds needed and for greater transparency on their use, to avoid dispersion, delays and allocation errors.
What the Alliance will do
- Bring priorities to light, through the voice of patients
- Sit as equals at national and regional tables from the outset
- Promote services that support patients and spread good practice
- Build alliances with every stakeholder in the therapeutic area
Launched by
Hon. Gian Antonio Girelli and the Parliamentary Intergroup on Prevention and Risk Management. The associations are coordinated by Health Engine.