FAQ
  1. What is HUGEN?

    2. Hacettepe University Center for Genomics and Rare Diseases (HUGEN) is a center operating under the Rectorate.

  2. In which fields does HUGEN operate?

    3. HUGEN conducts consultancy, education and research activities in the fields of genomics and rare diseases and participates in the formulation of policies regarding these diseases.

  3. Who are HUGEN’s stakeholders?

    4. You can access information about HUGEN’s internal and external stakeholders via the tabs in the “Rare Diseases Research Network” diagram located on the HUGEN website (hugen@hacettepe.edu.tr) homepage.

  4. What is a rare disease?

    5. Diseases that occur in the population with a frequency of less than five in 10,000 people are defined as rare diseases.

  5. How many rare diseases are there?

    6. There are approximately 8,000 different rare diseases recorded in medical literature.

  6. How many people in our country are affected by rare diseases?

    7. It is estimated that approximately 7 million individuals in our country are affected by rare diseases.

  7. Can I receive healthcare services from HUGEN for my rare disease?

    8. Direct healthcare services are not provided at HUGEN.

  8. Are treatment options available at HUGEN?

    9. HUGEN operates as a research center; treatment services are not available.

  9. Can HUGEN guide me on which hospital or department I should consult?

    10. Rare diseases involve the involvement of various different organs. Consequently, patients' symptoms vary and these conditions require a holistic evaluation. Therefore, if you have a rare disease, you should first consult Medical Genetics or Pediatric Genetics outpatient clinics or Genetic Diseases Evaluation Centers.

  10. Can I consult HUGEN regarding the results of a genetic test I have already undergone?

    11. It is not appropriate to interpret genetic diseases based solely on genetic test results. To receive proper genetic counseling, you should take your previous genetic test results and consult Medical Genetics or Pediatric Genetics outpatient clinics or Genetic Diseases Evaluation Centers in your province.

  11. Are there research projects conducted by HUGEN for undiagnosed patients?

    12. HUGEN’s stakeholders often in collaboration with HUGEN conduct numerous research projects utilizing the biological samples and genomics technology infrastructure housed at the Hacettepe University Rare Diseases Biobank. The institutional patient registry system, which is critical for the analysis of undiagnosed patients, was also initiated under HUGEN’s leadership.

  12. How can individuals diagnosed with a rare disease participate in treatment research?

    13. Individuals diagnosed with a rare disease can first obtain information from their treating physician regarding the possibility of participating in treatment research. Based on the patient's diagnosis, age, clinical status and current treatments, the physician can provide guidance on ongoing clinical trials at centers within the country. Participation in clinical trials may not be possible for every patient; such studies have specific inclusion and exclusion criteria. Individuals deemed eligible are provided with detailed information regarding the study's purpose, potential benefits, risks and follow-up process and participation proceeds only upon the provision of voluntary consent. For detailed information, you may visit https://kap.titck.gov.tr.

  13. Can I work at HUGEN?

    14. University academic staff members assigned by the Rectorate may work at HÜGEN.

  14. Can I do an internship at HUGEN?

    15. HÜGEN does not have an internship program.

  15. Are there training programs for healthcare professionals at HUGEN?

    16. A course on genetic literacy for healthcare professionals is being planned at HUGEN. You can follow the hugen@hacettepe.edu.tr webpage for detailed information about the course.

  16. Are there education programs for students at HUGEN?

    17. The HUGEN Executive Board has facilitated the launch of a multidisciplinary "Rare Diseases Elective Course" (offered in both Turkish and English) within the "Faculty of Medicine Undergraduate Medical Education Program" focusing on the theme of "rare diseases from childhood to adulthood." This course aims to provide students with fundamental knowledge and raise awareness regarding rare diseases.

  17. Can I collaborate with HUGEN as a student?

    18. A Rare Diseases Student Working Group has been established under the umbrella of the Hacettepe University Faculty of Medicine Scientific Research Society (HUTBAT), coordinated by the HUGEN Executive Board. You can collaborate with HUGEN by joining this working group.

  18. What kind of events does HUGEN organize within its scope of activities?

    19. HUGEN organizes a Rare Diseases Day event every year during the last week of February. Additionally, it organizes various events (meetings, symposiums, conferences, etc.) as part of its collaborative efforts with stakeholders and within its fields of activity.

  19. Where are the training sessions and events organized by HUGEN announced?

    20. You can find information about all training sessions and events organized by HUGEN under the "Announcements and Events" tabs on the hugen@hacettepe.edu.tr webpage.

  20. How can I contact HUGEN?

    21. You can contact us via the telephone number and e-mail address listed under the "CONTACT" tab on the hugen@hacettepe.edu.tr webpage.