Dialog to address challenges in rare diseases


Spanish Federation of rare diseases (feder), member of we are patients With a view to holding General election Submit the main next July 23 Straight People with rare and unknown diseases also face offers to address them.

document, informs Fedor, “Our will roadmap Working with both before, during and after the July 23 election Government as with Oppose to achieve our goals social change In rare and unknown diseases.

He Decologue of propositions It can be consulted in summary form presented in the document infographic,

, strategies: push one european action plan In rare diseases, updating the rare disease strategy of the National Health System (SNS) and standardizing its scope across autonomous communities.

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, record: Guarantee that the State Registry of Rare Diseases has adequate resources To fulfill its purpose and to expand its influence by coordinating with autonomous communities.

, Investigation: Facilitating the transfer and delivery of knowledge, optimizing the resources allocated to research in rare diseases continuity for specific programs.

, special care (CSUR): Promotion of new designation Barn Guarantee of its coordination in Spain and Europe include patients and raising awareness of the referral process.

, diagnosis: Secure this access fast and fit equity diagnostic tests, especially tests genetic and of newborn screening but is also implementing personalized medicine and the ORPHA code.

, Treatment: get equality in access Providing and expediting the process of making medicines available in all autonomous communities financing Including To bet from patients.

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, comprehensive care Humanizing the health system, ensuring equitable access to resources such as augmentation and alternative communication systems (hours), a socio-hygienic history and pediatric palliative care,

, social rights: make sure new the bahamians Responds to the needs of people with rare diseases, identifying strategies for social-hygiene coordination between health and social services.

, social inclusion: In this Class through training and especially for minors in the child protection system as well as in the environment Labor Overcoming the Hurdles of Early Retirement and Child Care Benefits serious illness,

, Training: make attribute of clinical genetics and guarantees rare diseases training for new professional generations in the field social and health,

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