Constitution of the foundation and identification data

Constitution date

May 20, 2008

Identification of the founder or founders

Isabel Gemio

Foundational endowment

30,000 euros

Registry of foundations in which the foundation and protectorate of ascription is registered

Unique Registry of Foundations of the Ministry of Education, Social Policy and Sports. Number 1059

Sole Protectorate of Foundations of State Competition.

Fiscal status: acceptance of Law 49/2002, of December 23. Entity beneficiary of patronage

Access to non-profit entity certificate

Registered office

c/Garibay, 7 3º 28007 Madrid

Current statutes of the foundation and other development regulations

Access to statutory document

Basic regulation by which the foundation is regulated

The foundations are organizations endowed with private legal personality constituted without profit purpose that by will of their founders have permanently affected their patrimony to the accomplishment of aims of general interest.

They are governed by the will of the founder, by its statutes and, in any case, by Law.
They must pursue general interest purposes that should benefit generic collectives of people.
In no case, may be established for the main purpose of allocating their benefits to the founder or employers, their spouses or persons linked with analogous relationship of affectivity, or their relatives up to the fourth degree inclusive, as well as individual legal entities that do not pursue purposes of general interest.
They will have legal personality from the registration of the public deed of their constitution in the corresponding Registry of Foundations.

The regulations applicable to the Foundations can be found at the following link of the Ministry of Education, Culture and Sports https://www.mecd.gob.es/servicios-al-ciudadano-mecd/fundaciones/informacion-general/normativa.html

Protectorate of Foundations: Royal Decree 1066/2015, of November 27, which modifies Royal Decree 257/2012, of January 27, by which the basic organic structure of the Ministry of Education, Culture and Sport is developed, all the functions of protectorate of the foundations of state competence are concentrated in the Ministry of Education, Culture and Sport, with the sole exception of the banking foundations.

Records of Foundations under the Ministry of Justice: Order PRE / 2537/2015, of November 26, which provides for the entry into operation and the headquarters of the Registry of Foundations of State Competition

Object

DESCRIPTION OF THE MISSION

The Isabel Gemio Foundation for the Research of Muscular Dystrophies and other Rare Diseases, was born in 2008 with the aim of contributing to accelerate research in Muscular Dystrophies, other Neuromuscular Diseases and Rare Diseases, in those biological, physiopathological, genetic or therapeutic aspects that they can influence the development and application of curative treatments for the sick, as well as encourage the exchange of information between experts and those affected and promote the development of pharmacology.

The Isabel Gemio Foundation focuses all its efforts on financing Scientific Research Projects that seek treatment or cure for Minority Diseases, known as “rare”, supporting basic biomedical, clinical and translational research of those groups that are leaders in Research in our country, fully or partially financing projects that are part of the CIBER Network.

DESCRIPTION OF THE ACTIVITY AREAS

The main objective of the Foundation is to promote the investigation of clinical curative treatments of muscular dystrophies and other rare diseases, paying special attention to the teams, centers and research institutions in this area, as well as to the affected people and their families. Its mission is to promote the improvement of the expectation and the quality of life of these patients. For the fulfillment of these purposes, the Foundation will develop directly or in collaboration with other public or private institutions, the program of activities that its Board of Trustees approves annually in its main lines of action:

Through aid to medical research, the Foundation contributes to the search and improvement of treatments for muscular dystrophies and other rare diseases and favors the sustainability of scientific activity in Spain.
Social Action, by which attention and information is given to the affected people and / or their relatives.
Public dissemination and sensitization of civil society, for which the social visualization of these minority diseases is sought, which due to their determining typology, are relegated to the treatment offered by the information media. As well as achieving greater awareness, participation and commitment in promoting the quality of life of these people and their families.

DESCRIPTION OF THE BENEFICIARIES OF THE ACTIVITY OF THE FOUNDATION

People affected by minority diseases and their families. As well as the scientific community dedicated to the investigation of these pathologies.

The direct and indirect benefits of these projects, given their wide spectrum of research, are specifically summarized in that if there is a clinical improvement with the results of the funded research and progress is made in their knowledge and treatment, patients can benefit and, obviously, , the families.

Organizational structure

Organization chart of the Isabel Gemio Foundation

Accountability

Audit report F. Isabel GemioBalances 2015-2016-2017

Annual accounts approved by the Board of the Foundation at its meeting on June 6, 2017. Click on: 2016 ANNUAL ACCOUNTS

Annual accounts approved by the Board of the Foundation at its meeting on June 20, 2018. Click on: ANNUAL ACCOUNTS 2017

Audit report corresponding to the annual accounts for the year 2017: Click on: Audit report F. Isabel Gemio 2017:

It should be noted that these exercises also contain what is referred to the project We are all weird, we are all unique, whose detail is on the website of the foundation in the section “What do we do”.

In the following link we include the audit of the project by clicking on each title: AUDIT REPORT FIGHTING EXPENSES FIG 2016. FIGHTER EXPENSES FIG 2017

RULES AND INVESTMENT POLICY: The Foundation does not have financial investments.

BREAKDOWN OF EXPENSES:

Exercise	Surplus of the year	Positive adjustments	Negative adjustments	Basis of calculation	Income to allocate	Percentage to allocate	Resources earmarked for purposes	Percentage finally destined

2015	-88.135,10	576.112,86	0,00	487.977,76	342.000,00	70,00%	576.112,86	168,45%
2016	96.597,16	591.371,90	0,00	687.969,06	481..578,34	70,00%	591.371,90	122,80%
2017	260.058,22	417.851,38	0,00	677.909,60	474.536,72	70,00%	417.851,38	88.05 %

As for the financing of research projects, each of our lines appears with the corresponding amount in the following section: What do we do

The financing table of the research lines of the Isabel Gemio Foundation in 2015-2016 and 2017 is as follows:

TRANSFERS 2015	AMOUNT	DATE
PROJECT SANT PAU HOSPITAL	35.000,00	FEBRUARY
PROJECT HOSPITAL DONOSTIA	35.000,00	FEBRUARY
PROJECT HOSPITAL LA FE	35.000,00	FEBRUARY
PROJECT HOSPITAL SAN PAU	18.600,00	DECEMBER
PROJECT HOSPITAL DONOSTIA	31.800,00	DECEMBER
PROJECT HOSPITAL LA FE	28.600,00	DECEMBER
TOTAL AMOUNT	184.000,00

TRANSFERS 2016	AMOUNT	DATE
PROJECT HOSPITAL SANT PAU	59.000,00	DECEMBER
PROJECT HOSPITAL DONOSTIA	59.000,00	DECEMBER
PROJECT HOSPITAL LA FE	45.000,00	FEBRUARY
PROJECT CENTRO BIOLOGÍA MOLECULAR-FOUNDATION SEVERO OCHOA-UNIVERSIDAD AUTÓNOMA DE MADRID	50.000,00	MARCH
TOTAL IMPORTE	168.000,00

TRANSFERS 2017	AMOUNT	DATE
PROJECT HOSPITAL SANT PAU	59.000,00	DECEMBER
PROJECT HOSPITAL DONOSTIA	59.000,00	DECEMBER
PROJECT SAN JUAN DE DIOS – BARCELONA-	59.000,00	FEBRERO
PROJECT CENTRO BIOLOGÍA MOLECULAR-SEVERO OCHOA-UNIVERSIDAD AUTÓNOMA DE MADRID FOUNDATION	70.000,00	MARCH
TOTAL IMPORTE	292.000,00

TRANSFERENCIAS 2018	IMPORTE	FECHA
PROJECT DRA. BELÉN PÉREZ. UNIVERSIDAD AUTÓNOMA DE MADRID	70.000, 00	MARCH
PROJECT DR. LÓPEZ DE MUNAÍN. PAÍS VASCO	59.000,00	DECEMBER
PROJECT DR. VILCHEZ. VALENCIA	50.000, 00	SEPTEMBER
PROJECT DR. PALAU. SAN JUAN DE DIOS BARCELONA	59.000,00	JUNE
PROJECT DRA. ILLA SAN PABLO Y SANTA CRUZ BARCELONA	59.000,00	DECEMBER
PROJECT DR. FUENTES EXTREMADURA	65.500,00	APRIL
TOTAL AMOUNT	362.500,00

The total financing of the lines of research of the Isabel Gemio Foundation is as follows:

PROJECTS 2009-2020		TOTAL	FINANCED	PENDING
PROYECTO DRA. ILLA		577.000,00	577.000,00	NEW AGREEMENT
PROYECTO DR. LÓPEZ DE MUNAÍN		477.000,00	477.000,00	NEW AGREEMENT
PROYECTO DR. VILCHEZ		330.000,00	230.000,00	100.000,00
PROYECTO LUIS MARIA ESCUDERO		66.200,00	66.200,00	0,00
PROYECTO DR. PALAU		177.000,00	118.000,00	59.000,00
PROYECTO DR. FUENTES		150.000,00	65.500,00	84.500,00
PROYECTO DRA. BELÉN PÉREZ		310.000,00	190.000,00	120.000,00
	TOTAL AMOUNT	2.087.200,00	1.723.700,00	531.500,00

ACTION PLAN APPROVED BY THE PATRONATE AND REFERRED TO THE PROTECTORATE

To access the 2018 Plan, you can click on the following link:Action plan 2019

Volunteer program

Content of the Volunteer Program of the Isabel Gemio Foundation

Other information

The Foundation does not have contracts with a public Administration, indicating the purpose, duration, amount of the tender and award and its modifications.

The Foundation does not have agreements signed with a public Administration, with mention of the signatory parties, its purpose, duration, modifications made, required to perform the benefits and the agreed financial obligations

The Foundation does not have management contracts signed with the Public Administration, indicating the purpose, budget, duration, economic obligations and subcontracts carried out with mention of the winners, procedure for awarding and amount.

Subsidies and public aid received with indication of their amount, objective or purpose and beneficiaries.

By Resolution of December 12, 2018 of the Ministry of Health, Social Services and Equality, the Foundation is granted a subsidy in the call directed to the realization of activities of general interest, with charge to the tax assignment of the Income Tax of the Physical Persons, convened by resolution of August 23, 2017 (BOE No. 209, of the 31st)

The title of the program object of the subsidy is “SINGULAR DISEASE: SCIENCE AND INNOVATION IN HEALTH CARE. RIGHTS OF PERSONS AFFECTED BY RARE DISEASES”, for an amount of EIGHTY THOUSAND (80,000.00) euros.

The purpose of the program is to achieve greater social integration of people affected by rare diseases and their families through:

The dissemination of knowledge, experiences and needs of this group of patients.
Sensitization and information to the target public about the reality of the people affected, and about the need to promote research projects. the systematic exploration of innovative projects in the field of health and research that aim to open and show possible lines of activity. This work must be in a network with multiple public and private actors that leads to stimulate the activity in social responsibility in this field.

The beneficiaries are the people affected by minority diseases and their families. As well as the scientific community dedicated to the investigation of these pathologies.

The Foundation does not have aggregate payments received annually by the members of the Board.

Good Government Code

CODE GOOD GOVERNMENT FIG

New data protection policy

ADDITIONAL INFORMATION ON THE PROTECTION OF YOUR PERSONAL DATA

For the purposes provided in Regulation (EU) 2016/679 of the European Parliament and the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and the free circulation of these data and whereby Directive 95/46 / EC (General Data Protection Regulation) is repealed, you are informed that the personal data provided will be incorporated (or updated) into the files of FUNDACIÓN ISABEL GEMIO, with address at Calle Garibay, 7 , 3rd right, 28007 MADRID Telephone: +34 911103158 and email: fundación@fundacionisabelgemio.com

RESPONSIBLE FOR THE FILE

The file that will contain the information provided in the form is owned by FUNDACIÓN ISABEL GEMIO, domiciled in Madrid, Calle Garibay, 7, 3º derecha, 28007 Madrid.

Para cualquier información adicional puede realizar cualquier consulta a través de los siguientes medios:

Phone number: +34 911 103 158
Email: fundación@fundacionisabelgemio.com

PURPOSE

In FUNDACIÓN ISABEL GEMIO we treat the information provided by interested persons in order to incorporate their personal data into a database for sending information about programs, activities, projects, news, and events of interest to the entity on behalf of FUNDACIÓN ISABEL GEMIO, using e-mail and / or SMS as a means. Automated decisions will not be made based on said profile.

FUNDACIÓN ISABEL GEMIO does not foresee the transfer of these data to third countries, nor to interested third parties. The personal data provided will be kept as long as its deletion is not requested by the interested party and, in the latter case, as long as it is not expressly prohibited by current regulations on data protection.

FUNDACIÓN ISABEL GEMIO is not responsible for those data provided voluntarily and additionally and that are not required, not being taken into account for the purpose described.

LEGITIMATION

The legitimacy of the processing of your personal data is based on the consent of the interested party.

RECIPIENTS

The recipient of your personal data collected through the following file will be FUNDACIÓN ISABEL GEMIO.

RIGHTS

Anyone has the right to obtain confirmation about whether, in FUNDACIÓN ISABEL GEMIO, we are treating personal data that concerns them, or not.

Interested persons have the right to access their personal data, as well as to request the rectification of inaccurate data or, where appropriate, request its deletion when, among other reasons, the data is no longer necessary for the fulfillment of the purposes for those that were collected and in compliance with current legislation.

In certain circumstances, the interested parties may request the limitation of the processing of their data, in which case, only, they will be kept for the exercise or defense of claims.

In certain circumstances and for reasons related to their particular situation, the interested parties may object to the processing of their data.

FUNDACIÓN ISABEL GEMIO will stop processing the data, except for compelling legitimate reasons or in the exercise or defense of possible claims.

Likewise, the interested party has the right to receive the personal data that has been provided to FUNDACIÓN ISABEL GEMIO in a structured format, of common use and readable by machine. This last right will be limited by the following conditions: that the data on which this right falls, have been provided by the person concerned; that your data be processed by FUNDACIÓN ISABEL GEMIO in an automated way (computer media).

TRANSPARENCY

DESCRIPTION OF THE MISSION

DESCRIPTION OF THE ACTIVITY AREAS

DESCRIPTION OF THE BENEFICIARIES OF THE ACTIVITY OF THE FOUNDATION

Audit report F. Isabel GemioBalances 2015-2016-2017

ADDITIONAL INFORMATION ON THE PROTECTION OF YOUR PERSONAL DATA