If you are interested in becoming a sponsor of ISCA 2022, or if you would just like to have more information about sponsorship opportunities, please contact Mike McGowan at [email protected].
About the International Scientific Conference on Albinism (ISCA) 2022
ISCA is the only conference worldwide specifically addressing all medical aspects of albinism.
ISCA is a unique international scientific conference gathering participants from all over the world, including researchers, health care providers, students, and albinism organization leaders, all sharing the same interest: to improve the health of those with albinism.
During the four-day virtual event, numerous albinism experts will address the many health concerns of persons with albinism. This includes dermatology, ophthalmology, psychology, genetics, therapies, syndromic forms of albinism and more, contributing to a rich and educational event.
Sponsoring ISCA aligns well with the GAAs vision of a world where all people with albinism enjoy all their human rights. Access to health is a basic human right. Collaboration between research and clinicians will lead to a better quality of life for those living with albinism.
Main objectives of ISCA
- improve the clinical and molecular diagnosis of albinism
- improve medical care for persons with albinism
- promote and facilitate albinism focused research programs
- stimulate the development of therapies to treat albinism
- connect medical professionals and researchers at both the local and international levels to foster collaboration in albinism treatment and investigation
- facilitate the exchange of best practices for treating persons with albinism among medical professionals and patient organizations
This conference was conceived as a continuation of a series of five conferences known as the EDA (European Days of Albinism). Five EDA Conferences were held from 2012-2020.
- 1st EDA Paris, France 2012
- 2nd EDA Valencia, Spain 2014
- 3rd EDA Milan, Italy 2016
- 4th EDA Hurdal, Norway 2018
- 5th EDA Virtual 2020
Outcomes of the Previous Scientific Conferences on Albinism
- creation of multidisciplinary outpatient centers in several European hospitals for patients with albinism, following the example of the Niguarda Hospital (Milan, Italy), leading to the improvement of medical care for people with albinism
- launch of new collaborations among researchers including joint research projects and the publication of several articles
- skill transfer between medical teams and genetics laboratories across borders leading to an improvement in diagnosis and management of patients with albinism
- better collaboration between the medical community and the patient associations, leading to innovative projects on medical care
- in France
- foreign medical professionals being trained in France to develop or improve their own country’s multidisciplinary albinism centers.
- creation of a program of therapeutic patient education specific to albinism,
- publication of national guidelines for diagnosis and management of patients with albinism
ISCA 2022 Scientific Advisory Committee Members
- Lluis Montoliu (CNB-CSIC and CIBERER-ISCIII, Madrid, Spain) –Chair
- Maria Mies van Genderen (Bartimeus, Diagnostic Centre for Rare Visual Disorders, Zeist, The Netherlands) – Vice-Chair
- Alexandra Rebsam (Institut de la Vision, Paris, France)
- Barbara Käsmann-Kellner (University Eye Clinic, Homburg, Germany)
- Benoît Arveiler (Bordeaux University Hospital, Bordeaux, France)
- Brian Brooks (National Eye Institute, NIH, Bethesda, MD, USA)
- Carolina Reato Marçon (Santa Casa de São Paulo Hospital, Brazil)
- Fanny Morice-Picard (Bordeaux University Hospital, Bordeaux, France)
- Irene Gottlob (Cooper University Health Care, Philadelphia, USA)
- Joseph Carroll (Medical College of Wisconsin; Milwaukee, WI, USA)
- Karen Grønskov (Kennedy Center, Clinical Genetics, Copenhagen, Denmark)
- Mathieu Fiore (Bordeaux University Hospital, Bordeaux, France)
- Michael Hoffmann (University Eye Clinic, Magdeburg, Germany)
- Michael Marks (Children’s Hospital of Philadelphia and UPENN, Philadelphia, PA, USA)
- Mervyn Thomas (University of Leicester Ulverscroft Eye Unit, Leicester, UK)
About the Global Albinism Alliance
In January 2020, an exploratory meeting was held in Paris, France. This meeting was organized by the UN Independent Expert on Albinism and sponsored by Under the Same Sun and the Open Society Foundations. Representatives of albinism organizations and others advocating on behalf of those with albinism from 6 continents (23 countries) voted unanimously to form an official albinism alliance. Delegates also approved a Pilot Project to establish a Global Albinism Alliance to promote solidarity among albinism groups around the world.
A GAA Pilot Team was elected by the delegates to the Paris meeting. In 2020 and 2021 the GAA Pilot team conducted an extensive consultation with albinism groups leaders around the world, including a worldwide survey. In 2022 the GAA Pilot Team issued a report proposing the organization and structure of a global alliance. The report included the following vision and mission statements.
GAA Vision: “A world where persons with albinism enjoy all of their human rights”
GAA Mission: “To advance the capacity of albinism organizations around the world, to promote greater knowledge of albinism, and to advocate at the global level to improve the enjoyment of human rights by persons with albinism and their family members.”
GAA activities are organized according to three pillars:
- member support,
- advocacy and education,
- research and information dissemination.
2022 is the startup year for the GAA. The Pilot Team is busy building an organizational infrastructure and beginning programming. These programs include live chats with the UN Independent Expert on Albinism, an online observance of International Albinism Awareness Day and an international scientific conference (ISCA).
|Registration for up to five members of your organization|
|The name and the logo of your company / foundation / society will be displayed on all ISCA 2022 communications|
|Information about your company / foundation / society will be emailed to conference attendees in an electronic packet|
|Your company / foundation / society will be mentioned and acknowledged in the opening session of ISCA 2022. The logo of your company will be included in the official conference slide deck template|
|A video (up to 90 minutes in length) about your company / foundation / society will be shown during one of the Main Sessions of ISCA 2022|
|Your company / foundation / society will be offered the opportunity to give a four minute live presentation at the opening session. The logo of your company will be displayed on the virtual background to be used by all speakers.|