Rare Disease Clinic

Since being designated as a Rare Disease Center in 2013, the Rare Disease Clinic has been dedicated to providing accurate diagnoses and systematic treatment for patients with rare diseases. With extensive clinical experience across a wide range of rare conditions, we strive to offer the most effective treatment plans tailored to each individual, aiming to improve overall quality of life.

Led by pediatric specialists, our clinic focuses on diagnosing and treating various rare diseases, including those affecting the nervous system. Personalized treatment plans are developed based on the unique characteristics of each patient, supported by advanced diagnostic tests and genetic analysis to ensure prompt and precise diagnoses.

In addition to medical care, we offer counseling services to support the psychological well-being of patients and their families, as well as genetic counseling to assist in family-based care and long-term disease management.

Consultations are conducted by specialists during designated clinic hours for scheduled patients. When necessary, a multidisciplinary collaboration system is in place to ensure comprehensive care. Beyond clinical services, we also provide educational and emotional support programs that offer up-to-date medical information related to rare diseases for patients and their families.

Through continuous follow-up and long-term health management, we walk alongside our patients throughout their journey. The Rare Disease Clinic remains committed to patient-centered care, standing as a reliable partner for those affected by rare diseases.

• Purpose

The purpose is to establish a rare disease treatment support system through the operation of a rare disease center in the Daegu-Gyeongbuk region to improve access to treatment, and to provide specialized, systematic, and high-quality rare disease medical services such as consultation, diagnosis, treatment, management, investigation, and research through the national registration of rare diseases in the region, management of rare diseases, and training of local medical staff.

• Our services include

Rare Disease Specialty Clinic

We provide more systematic medical services to patients with rare diseases who have difficulty in diagnosis and treatment in the local area to receive professional diagnosis, treatment, management, genetic counseling, etc.

Counseling Center

A consultation room is operated by a nurse dedicated to rare diseases to provide consultation services such as medical guidance, disease consultation, and business connections related to rare diseases.

* Rare Disease Consultation Center : 053-200-3775

* In addition, you can check rare disease information, medical expense support projects and calculation special cases, genetic diagnosis support projects, etc. through the rare disease helpline operated by the Korea Health Insurance Agency. http://helpline.kdca.go.kr

• Training rare disease specialists

We develop educational programs and hold symposiums and seminars to train local rare disease specialists. We also provide training to maintain the qualifications of ultra-rare disease diagnosticians.

• Supporting Rare Disease Patients

We provide various programs such as rare disease health lectures, self-help groups, counseling, and treatment programs to support rare disease families who are experiencing psychological and economic difficulties.

• Rare Disease Registry and Statistics Project

We survey, identify, and research newly diagnosed rare disease patients.

• Awareness Promotion

We operate various SNS and produce and distribute pamphlets to improve awareness of rare diseases.

• Daegu-Gyeongbuk Regional Rare Disease Center Homepage : https://knuh.modoo.at/

• Blog : https://blog.naver.com/knumcrare365/

Doctors

Kwon Soon Hak

Specialties: Pediatric neurology (developmental disorders, epilepsy and other seizure disorders, headaches, rare diseases, etc.)

<Chilgok Hospital Clinic>

•Thursday (Afternoon): Rare Disease Clinic (by appointment only – Chilgok)

•Monday, Wednesday, Friday (Afternoon): Pediatric EEG testing and interpretation

<Samdeok Main Clinic>

•Friday (Morning): Rare Disease Clinic on the 1st Friday of each month (by appointment only)

● Kyungpook National University Hospital: AM Friday

▲ Children's Hospital: AM Wednesday, Friday PM Tuesday, Thursday

Lee Yun Jung

Specialties: Pediatric neurology (neuromuscular diseases, movement disorders, developmental disorders, epilepsy and other seizure disorders, headaches, undiagnosed rare diseases, etc.

<Chilgok Hospital Clinic>

•Monday (Afternoon): 2nd and 4th weeks of the month

<Samdeok Main Clinic>

•Monday (Afternoon): 1st and 3rd weeks of the month

•Tuesday (Morning): National Bio Big Data Project Consultation

● Kyungpook National University Hospital: AM Tuesday, Friday PM Thursday

▲ Children's Hospital: PM Monday

Bae Hyun Woo

Specialties: Pediatric Neurology, Medical Genetics, Genetic Counseling

<Chilgok Hospital Clinic>

•Tuesday, Thursday, Friday (Morning): Pediatric EEG testing and interpretation

•Friday (Afternoon): Rare and Genetic Diseases Clinic (by appointment only)

▲ Children's Hospital: AM Monday, PM Wednesday