"It's Only Rare Until It Happens to You !" Join the Rare Disease Movement !
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For the attention of the President of the Republic, the Minister of Health
To acquire better care in the care and financing of care for people with rare diseases. For real recognition of rare diseases "Diseases are not so rare and they can all touch us in the course of a lifetime."
Mr. President of the Republic,
The situation of people who suffer from a rare disease is catastrophic.
People with these so-called RARES diseases encounter ALL similar difficulties in their journey, for example:
- Difficulties to have a diagnosis
- Obtain information about the illness and the course of care
- Orientation to competent professionals
- Access to quality care related to their illness
- Problem of autonomy and social insertion
- The majority of cases require a multidisciplinary medical team generally, they send them to walk around
Health insurance, built around major epidemics, has not yet taken into account the real dimension of rare diseases and has no strategy to understand the whole problem. But no progress can be achieved without individualizing the answers.
The care of the patient is failing. The almost total ignorance of the mechanisms of the disease heavily penalizes the intervention of doctors, paramedical professionals and caregivers. Faced with this situation, the patients are obliged to be the guarantors of their safety. Experts of their own experience and possessors of their file, their risks, their rights and their role must be recognized.
In the majority of cases: people suffering from a rare disease must, for medical treatment, benefit from medical care that is not reimbursed at all or not at all by health insurance, taking into account the specificities associated with it or the non-recognition of the effectiveness of the proposed treatments.
- the restructuring of multidisciplinary medical committees like that of Charles Nicole who was a pride abroad and who has marked the most in the lives of people with rare diseases like me and unfortunately no longer exists!
-Improve the care of people with rare disease
- The encouragement and funding of research on these orphan diseases not only by promises but rather by actual actions.
This request is made on behalf of friends who suffer in silence, anyone with these rare diseases
- Would there not be an opportunity to "normalize" or even globally so that treatments recognized as medically effective abroad can be also in our country? And so give a chance to patients to be cured or failing to be cured to be treated.
- Would there not be a way to obtain comprehensive management of the disease with effective coordination so that professionals work in a multidisciplinary way?
- Can national solidarity change the assumption of costs and living conditions by measures adapted to the specific needs of each person with a rare disease?
- What quantitative and qualitative means do you allocate to medical research in the context of rare diseases?
"It's Only Rare Until It Happens to You!"
Thank you all for joining us and helping us by signing this petition and circulating it as much as possible.
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