The Fernando Pombo Foundation began working with vulnerable patients in 2012, with the aim of defending their rights in order to help improve their quality of life. The Foundation understands that vulnerable patients are those people who are in a vulnerable situation (vulnerable women, the homeless, forced migrants, , etc.) and also suffer a rare, chronic or serious illness,a disability or have a mental health problem. In other words, people who are doubly vulnerable.
The Foundation has received the following national and international recognition for its work with vulnerable patients:
- Shortlisted for the PILnet (The Global Network for Public Interest Law) 2017 Global Pro Bono Awards, in the Local Pro Bono Impact category.
- “Promotion and Defence of Rights” from FEDER (2013).
UNIR-Fernando Pombo Foundation Legal Clinic reports
- The legal report “Labour inclusion of persons with disabilities” has been produced by Fernando Pombo Foundation upon request of the Spanish Rare Diseases Federation (FEDER). The report includes innovative legislative proposals and has been key to FEDER and the EUROPLAN project that aimed to make proposals to the Ministry of Health on specific actions on rare diseases.
- Legal reports in defending the rights of patients: (i) to the Spanish Thyroid Cancer Association by the “Access to pharmacological treatments approved by the European Medicines Agency” and the “Referral of patients between regions to access reference centers” reports, and (ii) for FEDER by the “Educational inclusion of children with rare diseases” and the “Right to diagnosis” reports in line with the pilot plan to improve the genetic diagnosis of the Ministry of Health.
The work with FEDER
In 2012, Fernando Pombo Foundation started a working group composed of lawyers specialised in public law, labor law and commercial law and also, one student took part in order to give support to the working group.
The aim of this working group is to meet the demands of FEDER for advising on patients rights. The group has elaborated several reports and has carried out several particular researches sharing the same goal with FEDER, which is informing and promoting the effective enforcement of the rights of those who suffer from rare or infrequent diseases. Until the moment, the undertaken work has been implemented in the following way:
a.) Patients referral
b.) Approval system for medicines and medical devices in the Common services Portfolio of the National Health Care System
c.) Possibility to finance orphan medicinal products with community funds
On the other hand, since last March 2, 2013 Fernando Pombo Foundation became an integral part of the Committee of Experts for Rare Diseases. The priority work of this Committee is to give proposals identified by FEDER and to ensure that no child, youth or adult is left without access to health.
Finally, it is worth to mention that the Spanish rare diseases Federation (FEDER) awarded Fernando Pombo Foundation at the category of “Promotion and protection of the Human rights” for the agreement achieved between the two entities in order to respond to the “great injustices and needs” of rare diseases.
Derivaciones de pacientes entre Comunidades Autónomas
Nota legal sobre los diversos aspectos relativos al proceso de derivación de pacientes a centros de referencia del Sistema Nacional de Salud
Nota sobre el sistema de aprobación de medicamentos y productos sanitarios y de inclusión y exclusión de los mismos de la cartera común de servicios del sistema nacional de salud
Posibilidad de financiar los Medicamentos Huérfanos a través de los Fondos de Cohesión
Legal Clinic: Association of people affected by Chronic Fatigue Syndrome and Multiple Chemical Sensitivities
Fernando Pombo Foundation jointly with the University Carlos III of Madrid have created an Academic Legal Clinic in order to provide free legal assistance to the Association of people affected by Chronic Fatigue Syndrome and Multiple Chemical Sensitivities (SFC-SQM Madrid). This project is implemented through the following activities:
– Support in obtaining the certificate for recognition, declaration and classification of the level of disease or disability that is issued by the Ministry of Health.
– Support in obtaining the right to be accompanied at the moment of the health inspection at the General Directorate for Social Security
– Assistance in obtaining disability card to CFS patients in the Community of Madrid