LIPODISTROFIAS

LIPODISTROPHIA

LIPODISTROPHIES

LIPODISTROPHIE

LIPODYSTROPHIEN
 About Us 2

Who are we and what are our objectives?

AELIP is an international association for people affected by lipodystrophy and their relatives, created on the 19th
April 2012 and registered with the Spanish Interior Ministry in the Registro Nacional de Asociaciones (the Spanish
National Registry of Associations) with the registration number 600744, registration date 31/08/2012, and CIF (tax
number) G 73753717. It was declared a public entity on April 15th, 2016. The association is composed of parents,
relatives and professionals across the world with the goal to create spaces for exchange and mutual support
between relatives and people diagnosed with Lipodystrophy; it also seeks to raise awareness about the public
health problems that come from uncommon forms of Lipodystrophy due to their low prevalence.

Its actions are directed towards children, young people and adults who suffer from Lipodystrophy and
the problems that stem from it.

AELIP intends to improve the quality of life for people suffering from Lipodystrophy and, in order to do
this, develops and implements directed services for people and families that live with Lipodystrophy
throughout the world.
About Us 3

¿What is Lipodystrophy?
Lipodystrophy is a group of diseases
characterised by the loss of adipose tissue. A
classification can be carried out according to its
etiology, being congenital (or familiar) or
acquired, or according to its anatomical
location, being generalised, partial or localised.
Depending on their causes, they can be
congenital (genetic) or acquired.

Genetic lipodystrophy is very rare, with an

estimated prevalence of 1:200,000-1:1.500.00,
which means that is difficult to diagnose
correctly and, consequently, treat properly and
efficiently. A common characteristic in the
majority of lipodystrophy cases is a
predisposition to suffer from diabetes mellitus,
dyslipidemia (usually Hipertrigliceridemia) and
cardiovascular diseases.

The therapeutic approach for lipodystrophy

has two paths: on the one hand, there’s prevention
and treatment of the associated metabolic and
cardiovascular disorders, and on the other, there’s
cosmetic treatment produced by the loss and/or accumulation of adipose tissue.

The known types of lipodystrophy are as follows:

• Berardinelli-Seip syndrome
-Subtype II. Celia encephalopathy
• Acquired generalised lipodystrophy (Lawrence
syndrome)
• Partial Family Lipodystrophy
• Dunnigan syndrome
• Barraquer-Simons syndrome
• Candle syndrome
• Hutchinson-Gilford Progeria
• Mandíbulacral dysplasia
• Atypical Progeroid syndromes
• Neonatal Progeroid syndrome
• Néstor-Guillermo Progeroid syndrome
About Us 4

Alliances that form AELIP

Member Alliance
National: The Spanish Federation of Rare Diseases unites
families with rare diseases in every community in Spain, making
common needs visible and proposing solutions to improve quality
of life, representing their interests, defending their rights and
promoting concrete improvements.

Europe: EURORDIS is a non-governmental alliance of organizations

composed of and directed by patients that represents 810
organizations of patients with rare diseases in 70 countries. It’s
therefore the voice of 30 million patients affected by rare diseases in
all of Europe.

Ibero-America: The Iberoamerican Alliance for Rare Diseases

is a network in 13 countries encompassing more than 500
organizations of patients with rare diseases. It coordinates
action to strengthen associated movements, give visibility to
Rare Diseases and represent people with uncommon diseases
to local, regional, national and international agencies,
creating a joint and permanent space for collaboration to
share knowledge, experience and good practice, in the areas
of society, healthcare, education and labour.

International: International Network for Rare Diseases

Alliances we are involved in

At the state level, AELIP collaborates with the Spanish Society of
Lipodystrophy, a not-for-profit scientific association, whose goals
are 1) to distribute information about the disorders to professionals
of biomedical sciences, patients and families; 2) to promote basic
and clinical research about types of lipodystrophy and 3) to advise
public and private institutions about these ailments.

Working at the European level, ECLip is a fully functional network

of distinguished European research centers that works in the field
of lipodystrophy and provides the appropriate environment to
promote and facilitate large research studies throughout Europe. It
promotes the basic scientific understanding of these disorders and
the development of better diagnostic methods for prevention and
patient care. It promotes, finances and proposes lines of
international research in the field of lipodystrophy.
About Us
Portfolio of Services
AELIP offers a portfolio of services and activities to improve the quality of live for users and
their families.
SIOLIP
(Service for Information and
Guidance on Lipodystrophy)
Provides information and
guidance on how to deal with the
disease for relatives and people
diagnosed with a rare type of
lipodystrophy.
AVAILABLE SERVICES
RAISING
AWARENESS
(Actions to make the reality
of lipodystrophy known)
AELIP considers it necessary
to take actions to increase
public knowledge and and
give greater visibility to
lipodystrophy as a set of rare
diseases. The association is
developing different
campaigns that aim to
increase public awareness
and raise the problem’s
profile.
SAP
(Psychological Support Service)
This service is delivered
online or in person and aims
to alleviate emotional
suffering, promote skills that
allow an incresase in self-
esteem, and support the
management of personal
difficultuies and feelings of
social rejection.
TRAINING
(Lipodystrophy Training
Service)
Training for professionals,
students and families about
basic and specific actions of
lipodystrophy.
5
SAJ
(Legal Advice Service)
Intended to promote the defence of
the rights of people affected by
lipodystrophy.
RESEARCH
(Support for Different
Research Paths)
Support and promotion of
research paths into lipodystrophy
SAS
(Service for Sexual Advice)
This service will work to resolve
anxieties, doubts, worries, or
difficulties effectively, by means of
a brief intervention to avoid
pathologizing situations with
sensible resolutions. Through the
consultation, the person or
partners will be guided so that they
will find their own keys to success
About Us 6

Other Services and Activities

Political Action
AELIP aims to make lipodystrophy
a priority as a social and public
health concern within the national
health systems and in the countries
of the European Union and Latin
America
For this, the association and
administrations work together to
promote the creation of reference
centers, patient registries, and
equal and equitable access to
treatments.

Family Respite
A service intended to offer a meeting point for families and patients, composed of recreational activities, art, sports, etc., in
which the patients can participate as they wish.

Volunteering
This is an essential, vivid and important
part of our association.
Our team of volunteers covers different ages and profiles: high
school students, university students, and professionals of
various backgrounds
Thanks to them, it’s possible for AELIP to carry out the
activities in its annual work plan.
About Us 7

International Symposium
The International Symposium on
Lipodystrophy is a space dedicated to
lipodystrophy in which AELIP acts as a
link to bring together the patients, family,
medical professionals and researchers
in the field. The symposium aims to
analyse the latest advances, share
experiences, promote methods of
financing, improve the quality of life for
people affected and their families, and
find new professionals working in the
field.
Since the Symposium, the people
affected and their families feel more
hopeful about the advances in research.
This hope is augmented by the
improvement brought about by leptin
treatments for lipodystrophy cases.
OBJECTIVES
To create opportunities for exchange and
mutual support between relatives and
parents of children with lipodystrophy. To
improve the quality of life for poeple that
live with lipodystrophy. To promote
research in the full scope of the field of
lipodystrophy.
About Us

Other Activities and Services

Committee of Experts and Advisors
AELIP offers its users an international committee of lipodystrophy experts and advisors to answer any
medical questions related to the disease. Consultation requests can be sent to the Committee of Experts
and advisors at the following email address: info@aelip.org
The members of the Committee of Experts have proven experience in the diagnosis and treatment of these
diseases (medical specialists, professionals with proven experience in the diagnosis and treatment of rare
lipodystrophy throughout their work in reference units and/or specialist centres on adipose tissue diseases and
diabetes or published on rare lipodystrophy in at least 5 scientific journals with a cumulative impact factor not less
than 10).
The Advisory Committee is composed of physicians and scientists in the field of health sciences who have
a research priority in some aspect of rare lipodystrophy. To be a member of the Advisory Committee on
Aelip Lipodystrophy, a number of requirements must be fulfilled: being a
physician/biologist/biochemist/pharmacist/psychologist; working on projects financed by public agencies or
private entities on rare lipodystrophy; have published on lipodystrophy in at least two scientific journals with
a cumulative impact factor not less than 3.
About Us 9

Initiatives
World Lipodystrophy Day (March 31st)

World Lipodystrophy Day emerged as a platform to

develop benchmark activities as well as to
undertake, unite and promote political and social
actions in different parts of Spain and Europe in
collaboration with the alliances of Ibero-American
countries (ALIBER) and the European Organization
of Rare Diseases (EURORDIS). The first World
Lipodystrophy Day was celebrated in 2013.
AELIP celebrates its most important international
awareness campaign of the year: World
Lipodystrophy Day on March 31st, a campaign
driven by the European Organization for Rare
Diseases (EURORDIS) and developed in
coordination with the Ibero-American Alliance of
Diseases Little Fre-counts (ALIBER), Spanish
Society for Lipodystrophy and the European
Consortium for Lipodystrophy.
AELIP’s campaign objectives include:: Important campaign isconducted mainly on social
- To raise awareness of lipodystrophy as a public
health issue. media(Twitter and Facebook) through two actions:
- To put in place actions to avoid the social isolation - Inviting people to make the gesture of the “L” of
from which the people and families affected by “lipodystrophy” with their right hand. To participate in
lipodystrophy often suffer. this campaign it’s proposed that everyone provides a
- To disseminate information about the characteristics photograph showing their hand making an “L” shape,
and particularities of lipodystrophy formed by the thumb and index finger, to symbolize
- To co-ordinate all parties involved: patients, public the first letter of the disease. In this way, we will raise
administrations, health professionals, etc., in order to public awareness about the disease.
identify resources and improvement the care of those - Then the images should be uploaded to social media
affected. with a hashtag – either the word AELIP or
In order to raise social awareness about lipodystrophy preceded by the hash sign (#AELIP for
lipodystrophy and gather as much support as example). Many people are joining the initiative,
possible for research into the disease, the most including celebrities.
Visibility Campaigns 10

Initiatives
Personalities supporting our cause
Visability Campaigns 11

Initiatives
“Let’s score a goal against rare diseases”

A wide awareness campaign with the support of iconic football figures. In the campaign, the "ball of
solidarity," a ball marketed to raise money to fund research into this type of rare disease, is
promoted.
The campaign is supported by football coach Vicente del Bosque and player Andrés Iniesta, whose
signatures are printed on each ball. The ball is decorated with the hands of the children of the
associations involved: AELIP and D´Genes.

The proposal is for a minimum of 5 years, with each year featuring a ball with a new design.
Visibility Campaigns 12

Initiatives
Recycling in Solidarity

The three solidarity

campaigns for recycling
plugs, cellphones and
printing toner have different
points throughout the region.

Through this program for

environmental sustainability,
we will continue to finance our
services.

Lipodystrophy Goes to School

This initiative was created to raise awareness among youth within the educational community by
putting on various activities.
Visibility Campaigns 13

Initiatives
GalaPremios AELIP
GalaPremios AELIP is an
annual gala, the main
objectives of which are to
raise awareness of the
problems of lipodystrophy and
to raise funds. Here people
and families affected, health
professionals and people
aware of the problem of
lipodystrophy who want to
collaborate come together.
During the gala celebration,
there are many activities,
such as a meal and an award
ceremony, which is put on to
give recognition to and show
gratitude for distinguished
organizations, companies or
individuals who collaborate
with us to help AELIP improve
the quality of life for patients
and their families, and help
spread awareness of the
needs and demands of the
people affected who need all
of our support.
Awards are given in the
categories of citizen
involvement, solidarity work,
volunteering, research,
institutional support, media,
educational centres,
corporate solidarity, sports
club solidarity and mention of
World Day for Lipodystrophy.
Visibility Activities 14

A full year of activities to

make rare diseases visible
Throughout the year, AELIP organises and participates in various activities and actions to give visibility to
lipodystrophy and show the world the reality of the people who live with these diseases.
Visibility Campaigns 15

Our Goal is their Future

LINES OF RESEARCH FROM THE UNIT OF LIPODYSTROPHY (UETeM) AT THE
MOLECULAR MEDICINE AND CHRONIC DISEASES RESEARCH CENTRE (CIMUS) AT THE
UNIVERSITY OF SANTIAGO DE COMPOSTELA (2003-2017)

UETeM was created in 2003

under the auspices of Professors
Lado-Abeal and Araújo-Vilar in
the Faculty of Medicine at
Santiago de Compostela. Since
2008 the unit has been dedicated
exclusively to research on the
clinical and molecular aspects of
uncommon lipodystrophy
syndromes. Since then director
has been Dr. David Araújo-Vilar,
professor of medicine and a
doctor specializing in
endocrinology and nutrition at
the University Hospital complex
of Santiago de Compostela
(CHUS), responsible for the
lipodystrophy unit in the CHUS
endocrinology department,
which is part of the Centre of collaborating medical
National Reference (CSUR) for students (María
Hereditary Metabolic Diseases González-Alonso, Lia
and European Expert Centre García-Formoso and
(Metabern). Dr. Araújo-Vilar was Zeus Díaz-Vilela).
also one of the founders in 2012
of the European Consortium of
Lipodystrophy (ECLip, www. LINES OF RESEARCH
european- 1.Celia’s encephalopathy: This
lipodystrophies.org/en). Since This childhood neurodegenerative
2012, the laboratories of the disease was discovered at UETeM
UETeM have been located in the in 2011 by Dr. Araújo-Vilar (Guillén-
Molecular Medicine and Chronic Navarro et al, J Med Genet 2013).
Diseases (CiMUS) Research (hypertriglyceridemia, diabetes, fatty liver)
Centre at the University of The disease is a very rare disorder
and can occur in very young children
Santiago de Compostela. (less than one case per 1 billion
(months old). Today, 7 cases of the
people) characterized by an
The UETeM is currently extremely serious encephalopathy
disease have been identified, of which 6
constituted by the following have died. This disorder is a very serious
members: David Araujo-Vilar that begins in early childhood. Over
variant of general type 2 congenital
(Endocrinologist and titular 3 years these children undergo a
lipodystrophy (Berardinelli-Seip syndrome
Professor of Medicine), Joaquín rapid and progressive neurological
Lado-Abeal (Endocrinologist and involution that causes them to lose type 2). Recently, the research team has
titular Professor of Medicine, identified a variant of Celia’s
their cerebral functions (language,
accredited as Professor of encephalopathy due to a different
motor functions, ability to interact
University by the ANECA), Sofía mutation in the BSCL2 gene, with a
Sánchez-Iglesias (PhD in with media), brings bouts of
practically superimposed clinical profile
Biochemistry and laboratory myoclonic epilepsy, which is very
but with a somewhat longer survival time
manager), Cristina Guillín- difficult to control, and leads to
Amarelle (Endocrinologist and death before the age of nine.. In (10-11 years).
PhD in Medicine), Antía some cases, children also have a
Fernández-Pombo (Resident of general loss of fat (lipodystrophy),
Endocrinology and Nutrition and
PhD Student) and Yanis which involves metabolic and
Bouzaher (graduate in biology hepatic complications
and PhD student), and
Research Areas
Today, there is no cure for this
disease. However, the UETeM
team has made significant
progress in slowing neurological
damage. For four- and- a- half
years they have treated the only
girl alive with PELD with
recombinant leptin and a diet rich
in polyunsaturated fatty acids and
supplemented with omega-3 fatty
acids. Today, the girl, who is
already 8 years old, is not only
alive but has experienced a
modest improvement in
psychometric tests and, strikingly,
in neuroimaging studies. At the
moment, they are evaluating
other therapeutic options, if not to
cure, to at least to delay the
process.
Search for new genes involved
in familial partial
lipodystrophy. Familial partial
lipodystrophy is a Mendelian
disease that can be caused by
mutations in different genes. To
date, 7 genes have been
identified, but in more than 50%
of patients no mutations have
been found. One of the lines of
research in this group is to find
new genes responsible for this
subtype of lipodystrophy.
Although so far they have located
a couple of new candidate genes,
their most ambitious project in
this field is being carried out in
collaboration with the University
of Cambridge and the Wellcome*
Trust Sanger Institute in the
United Kingdom. Together with
these institutions, the group is
analysing genomes of more than
60 patients with familial partial
lipodystrophy type 1.
1. Pathogenic mechanisoms of along with diet and physical
Dunnigan Disease. Dunnigan exercise, treatment with human
Dunnigan disease or familial
partial lipodystrophy type 2 is
caused by certain mutations in
the LMNA gene, a gene that
encodes a nuclear protein called
Lamin A/C. To this day it’s not
known with certainty through
which mechanisms these
mutations give rise to such a
particular loss of adipose tissue.
Studies carried out in our
laboratory and by other groups
suggest that certain mutations in
LMNA prevent adequate
processing of the Lamin A/C, thus
resulting in an
accumulation of the immature 1. Other
form of the protein, the Prelamin A. alternatives: UETeM participates
This excess of immature protein
would alter the processes of
adipodal differentiation (Araujo-
Vilar et al., J Med Genet 2009).
However, this mechanism may be
unique to adipocytes, because in
the fibroblasts of these patients this
accumulation has no place (and Tu
et al., Nucleus 2016). In the coming
months, we intend to initiate a
series of experiments in
preadipocytes of patients with this
disease to deepen the epigenetic
alterations.
2. New treatments for rare
lipodystrophy
Leptin human recombinant: today,
recombinant leptin is the only
treatment that allows adequate
control of the metabolic and hepatic
complications associated with
generalized lipodystrophy. The
research group in Santiago de
Compostela is the only institution in
Spain that has been authorised for
its prescription. Today, they are
treating 11 patients with this drug
and are awaiting clearance to treat
three more patients.
16
therapeutic
in a multicentric clinical trial in its
second phase of three where the
efficacy of a new treatment for
hypertriglyceridemia in familial
partial lipodystrophy is being
verified. It’s a drug of second
generation antisense
oligonucleotides, which is a hybrid
with the messenger RNA of the
gene that encodes the Apoprotein
ApoC-III.
5. European Registery of
Lipodystrophy: After two years of
scientific discussion, members of
the European Lipodystrophy
Consortium (ECLIP) (http://www.
European-Lipodystro-
phies.org/en/) have approved the
development of a European
register for patients with rare
types of lipodystrophy
(http://134.60.15.143:8080/Login.
xhtml). The registry will be based
at the German University of Ulm
and will be financed by the funds
of the members of ECLIP. The
intention is to keep the register for
a minimum of 10 years and to
carry out a detailed study of the
natural history of the different
subtypes of lipodystrophy.
Visibility Campaigns 17

LINES OF RESEARCH AT THE HOSPITAL DE LA PAZ

(MADRID)

The Immunology Unit and the Biomedical Research Institute of

the University Hospital La Paz (IdiPAZ) is developing another
line of research conducted by Margarita López Transcasa
(Principal Researcher) and Fernando Corvillo Rodríguez
(Doctoral Researcher).
This research group has focused its research on the study of
immunopathological mechanisms in acquired types of
lipodystrophy (Barraquer-Simons Syndrome and Lawrence
Syndrome).
The main activities are summarized as follows:
-Study of the plasma profile of the complement system: deter-
mination of the circulating levels of C3 and C4, and other proteins in this system.
-Determination of autoantibodies related to the deregulation of the complement system: nephritic factor of C3
(C3NeF), antibodies against C3, factor B, properdin, factor H and factor I.
-Detection of specific antibodies against adipose tissue.
-Design of tests to help diagnose these pathologies.

Study of autoimmune mechanisms in acquired lipodystrophy

Researchers: Margarita López Transcasa (Principal Researcher) and Fernando Corvillo Rodríguez (Doctoral
Researcher).
Rare Diseases Studied:
• Barraquer-Simons syndrome (ORPHA:79087)
• Lawrence syndrome (ORPHA: 79086)

SEARCH FOR ASYMPOTOMATIC CARRIERS OF CELIA’S ENCEPHALOPATHY IN THE REGION OF

MURCIA. CENTRE FOR RESEARCH IN MOLECULAR MEDICINE AND CHRONIC DISEASES (CIMUS)
OF THE UNIVERSITY OF SANTIAGO DE COMPOSTELA
Celia’s Encephalopathy is an extremely severe neurodegenerative disorder,
of which several cases -- all of them natural -- have been
identified in the Spanish regions of Totana, Mula and Jumilla.
Celia's encephalopathy is an autosomal recessive disease
that results from Mutation C. 985C > T in the gene
BSCL2-Seipin. It’s striking that a pathogenetic mechanism of
this type, a toxic gain-of-function, does not cause any effect in
the simple heterozygotes (carriers). In fact, all the studies
carried out in the parents of the affected people (clinical, neuro-
imaging and electrophysiological) have turned out normal.
Preliminary studies suggested that in asymptomatic carriers the production of wild-type seipin "kidnaps" the small
amount of Celia-seipin that is formed, preventing the start-up of the mechanisms of cellular toxicity [2].
Another extremely striking fact is the accumulation of pathogenic mutations in BSCL2 in a small geographical
territory (Totana-Mula-Jumilla). In addition to the aforementioned mutation C. 985C > T, responsible for Celia's
encephalopathy, two more mutations have been identified in the same gene in 4 of these children and in some of
their parents.
Given the significant consequences of the union of the two asymptomatic carriers, a study was carried out of the
real prevalence of this mutation in Murcia, and in particular in Totana, was completed with a dual focus: the rapid
detection of probable carriers, and the estimation of the actual prevalence of the mutation C. 985C > T.
The rapid detection of probable carriers: would have.
The sequencing studies were carried out in the unit of Thyroid and Metabolic Diseases Group of Molecular
Pathology in the Department of Medicine-IDIS-CIMUS at the University of Santiago de Compostela.
 International 1

AELIP goes International

Aiming to cover people who live with lipodystrophy in any part of the
world

AELIP is an international association and, therefore, works in various areas that allow us to develop an international
network composed of physicians and socio-sanitary professionals to consult both people who suffer from a
lipodystrophy and their families worldwide
Currently, the AELIP website has its own domains in Spain, Portugal, Germany, France and the United Kingdom.

DELEGATIONS

In addition, AELIP has several delegations in Spain such as those already established in Huelva, Menorca, Vigo and
Murcia.
Internationally, we work to consolidate delegations in Europe that, together with the current ones as in the case of
Chile, Venezuela, Brazil, Peru and Portugal, allow us to establish ourselves throughout the world.

CHILE BRASIL ARGENTINA

International Delegations

PORTUGAL VENEZUELA PERÚ

 Communications 19

DISSEMINATION AND PROMOTION

AELIP has a webpage with different domains in

several countries and presence on social media

One of AELIP's main objectives is to give visibility to and

bring society closer to the reality of rare diseases. As a
result, its communication policy is based on providing
the utmost information and transparency to meet that
end goal.
Last year we renewed our website, making it more
intuitive with a more modern design. In the digital age,
the website is an exceptional showcase that AELIP wants
to take advantage of in order to be closer to society and to make their
activities, work and concerns known. The Association has a web page in different languages and with
different domains in each country.
Moreover, this communication policy has made use of the frequent dissemination of news items, so
that different sorts of information have been produced, both for distribution across the internet and
for submission to the media. In addition, the presence in social networks has also been effective.
Throughout 2017 the association has been very present on Facebook, Twitter and Instagram.

www.aelip.pt de.aelip.org www.aelip.es www.aelip.co.uk www.aelip.fr

Communications 20

IMPACT IN THE MEDIA

Celia’s Encephalopathy
The congenital lipodystrophy Berardinelli-Seip syndrome is the
result of an alteration in the gene BSCL2, but in the case of
Celia’s Encephalopathy, doctors have discovered that the
mutation is different from the one usually described and is also
present in the genes of both the father and the mother.
"The alteration is harmful to the central nervous system and
ends in an encephalopathy," explains the endocrinologist David
Araujo, of the Faculty of Medicine at Santiago de Compostela.
Araujo has embarked, together with the genetics unit of the
Arrixaca directed by Encarnación Guillén, on an investigation
to try to clarify why four other cases of Berardinelli-Seip Synd-
rome have been diagnosed in the region, thus meaning a high
incidence rate, and why two deceased patients also suffered,
like Celia, from a neurodegenerative process.

capital.com.pe/mundo/espana-conoce-la-enferme-
elmundo.es/salud/2016/04/26/571e48a9ca4741f3508b463a.html dad-con-solo-6-casos-en-el-mundo-noticia-969013
Communications 21
IMPACT IN THE MEDIA

Celia’s Encephalopathy
publico.es/ciencias/encefalopatia-celia-sindrome-
degenerativo-infantil.html

capital.com.pe/mundo/espana-conoce-la-enferme-
dad-con-solo-6-casos-en-el-mundo-noticia-
9690laopinion.com/tema/encefalopatia-de-celia/

lavozdegalicia.es/noticia/salud/2016/03/13/
lacronicadelpajarito.es/region/enfermedad-rara- avanzar-red-vencer-enfermedades-raras/0003_
que-unicamente-se-oculta-region-murcia 201603G13P38991.

bbc.com/mundo/noticias/2016/06/160602_celia_ infosalus.com/asistencia/noticia-encefalopatia-ce-
encefalopatia_enfermedad_nina_salud_espana_ac lia-nueva-enfermedad-rara-solo-descrita-murcia-
20160627125454
Communications 22

IMPACT IN THE MEDIA

World Lipodystrophy Day

Communications 23

IMPACT IN THE MEDIA

Further Information
How To Collaborate 24

Support AELIP
With your collaboration, many
people have a new day
Every action counts and AELIP allows you to
help people and families who live with
lipodystrophy anywhere in the world. The
collaboration of individuals, companies and
institutions that support our cause, concerns
and projects, allows AELIP to develop the
described service portfolio.

AELIP, CIF (tax number) G-73753717, was

declared a public entity by the Ministry of the
Interior on April 7, 2016. This means that
there are tax advantages for donations to
AELIP as a not-for-profit organization.

Donations can be made through the

following bank
La Caixa: 2100 2759 23 0200101469
Also, remember that you can benefit from
significant tax deductions in corporate tax,
since 35% of the amount of the donation
will be deductible in the corporate tax
return in the case of companies, while
individuals can deduct 75% of the
contributions made from their income tax
returns.
 Address
C/San Cristóbal, 7 Totana (Murcia)
Telephone
+34 692397840
Email
info@aelip.org
Social Media