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IMPORTANT! IMPORTANT! IMPORTANT!
The information in this site is provided completely free of charge for educational purposes and should not be used for self diagnosis and treatment. In the case of a health problem, please contact your doctor!
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Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) is a free educational and information service in Bulgarian and English languages, providing personalized replies to requests from patients, families and medical professionals.
Any medical or health information, provided and hosted on this site is given by medically trained and qualified professionals. The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her doctor. Confidentiality of data relating to individual patients and visitors to ICRDOD, including their identity, is respected by this website. We undertake to honour or exceed the legal requirements of medical/health information privacy that apply in Bulgaria.
ICRDOD is a project and activity of the Bulgarian Association for Promotion of Education and Science (BAPES) – a non-government non-profit organization, registered under the Bulgarian law on legal persons with non-profit purposes in 2003. For the realization of this website, BAPES utilizes its own funding, received from private donors. The director and all consultants of ICRDOD are contributing on volunteer basis.
ICRDOD AIMS
➢ Facilitate the access of patients with rare diseases to information about the disease affected them;
➢ Providing medical professionals with quality information about rare diseases;
➢ Running a multilingual Internet site about rare diseases and orphan drugs (www.raredis.org) with news, educational topics for patients, doctors and associations, discussion forums, etc.;
➢ Encourage people with rare disease to establish patient associations, which is the way to protect their human rights and to participate in regulatory actions;
➢ Establish contacts between patients/patient groups, who need an information for specialised clinics, clinical trails, treatment, and medical professionals in Europe;
➢ Bridging between patients with rare diseases, researchers and industry;
➢ Lobbying and advocating for adopting of adequate rare disease and orphan drug legislation;
➢ Networking and integrating with the other similar national and international organizations;
➢ Active search for partners for collaboration and support at a national and international level;
ICRDOD TEAM
Assoc. Prof. Dr. Rumen Stefanov, MD, PhD (short CV)
Director of ICRDOD
Orphanet national co-ordinator
Dr. Ralitza Jordanova, MD
Technical assistant and communication with patients/consultants
Orphanet Information Scientist
Mr. George Iskrov
International programmes and projects
Ms. Lilia Popova
Technical assistant and communication with patients/consultants
Assoc. Prof. Dr. Margarita Stefanova, MD, PhD (short CV)
Consultant in human genetics
Assoc. Prof. Dr. Mariana Murdjeva, MD, PhD
Consultant in immunology
Dr. Ivan Ivanov, MD, PhD (short CV)
Consultant in pediatric neurology
Dr. Christo Shipkov, MD, PhD (short CV)
Consultant in surgery
Dr. Dimitrina Konstantinova, MD
Consultant in human genetics
Dr. Pavel Balabanov, MD, PhD (short CV)
Consultant in neurology
Dr. Nikolay Botushanov, MD (short CV)
Consultant in internal diseases and endocrinology
Dr. Iliana Pacheva, MD
Consultant in pediatrics
Dr. Petya Blagoeva, MD
Consultant in psychiatry
Mr. Svetoslav Nikolov
Web programmer and administrator
NK Software
Dr. Vesela Stefanova, DD
Member of the Board of Directors of BAPES
Mr. George Georgiev
Hosting administrator and programmer
Dr. George Stefanov, MD, PhD, MBA
Member of the Board of Directors of BAPES
PRIVACY STATEMENT
Personal data are all kinds of information concerning an individual, which reveals his/her physical, psychological, mental, family, economic, cultural or public identity. The Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) is obliged and engaged with the implementation of all necessary technical and organizational means, in order to protect your personal data from unauthorized access and use.
You have the right to send a written petition to ICRDOD, by which you can:
* Ask for a confirmation for the existing personal data, concerning you;
* Update or change your data;
* Clarify the conformity with the law of the storage and processing of your personal data;
* Forbid ICRDOD to share entirely or partially your data for commercial information, advertisement or market surveys;
*Ask to be informed, before your data is revealed for the first time.
Sharing of your personal data to third-party is permitted only if:
* The respective individual has given his consent in advance;
* Data sources are public registers or documents, containing public information;
* This data will protect the health and life of the individual, as well as in cases when his/her condition is not permitting to provide with informed consent or there are juridical obstacles for this.
* This data are officially asked by the prosecution or police authorities in order to protect the concurrency and users after the law.
* This data are necessary for scientific, research or statistical purposes, but guaranteeing anonymity for the individual.
ADVERTISING POLICY
There is currently no advertising or sponsored content on the ICRDOD website. To provide quality health information, education and news in a timely manner to our users, we may permit health-related advertising on our site. However, we do not allow outside advertisers to affect the quality or accuracy of information on our site, and we maintain a stringent policy of editorial independence. ICRDOD does not endorse any products. We maintain complete editorial independence with respect to our content in every circumstance. We do not permit advertisers or other third-party sponsors to make changes to the website content. We do not accept advertising that is false, misleading, ineffective, dangerous, or for firearms, alcohol, tobacco, and pornographic products or websites. We do not provide or sell any information to a third party that would allow it to identify a person’s individual medical circumstances or conditions. ICRDOD does not accept “advertorials”. Advertorials are articles provided by sponsors with the sole purpose of promoting a product or service. However, news or articles on www.raredis.org may link out to off-site advertorials company websites, that www.raredis.org has no control over. Our site www.raredis.org occasionally shares anonymous aggregate statistical information regarding site usage and traffic with public. This information cannot be linked to individual users and is entirely anonymous.
CONTACT INFORMATION
Bulgarian Association for Promotion of Education and Science (BAPES)
4 Bratia Sveshtarovi str., 4017 Plovdiv, Bulgaria
e-mail: bapes@mail.bg
Information Centre for Rare Diseases and Orphan Drugs
15a Vasil Aprilov blvd (University hospital campus), 4000 Plovdiv, Bulgaria
e-mail: info@raredis.org
HELP LINE: +359-32-575797
DOWNLOADS
ICRDOD Activity Report for 2005 – click (English, PDF format, size 4.96Mb)
Rare diseases as a medical and public health problem (reprint from the journal ) – click (Bulgarian, PDF format, size 2.9Mb)
Letter-support from the Bulgarian Ministry of Health – click (English, PDF format, size 583Kb)
Letter-support from (Bulgarian, PDF format, size 302Kb)
Letter-support from (Bulgarian, PDF format, size 244Kb)
Letter-support from the BULGARIAN SOCIETY OF CARDIOLOGY – click
(English, PDF format, size 337 Kb)
Letter-support from the Bulgarian Society of Human Genetics – click