SE-ATLAS

Mapping of Health Care Providers
for People with Rare Diseases

Klinik für Pädiatrische Hämatologie und Onkologie am Universitätsklinikum Freiburg

Description of facility

Director / Spokesperson
Prof. Dr. med. Charlotte Niemeyer
Information
Care facility for children
Description
Diese Klinik behandelt Kinder und Jugendliche mit angeborenen und erworbenen Bluterkrankungen, Leukämien, Tumoren und Gefäßfehlbildungen ambulant und stationär. Im Fokus steht die umfassende Versorgung der Patienten. Dabei arbeiten Ärzte verschiedener Fachdisziplinen mit dem Pflegepersonal und anderen Fachkräften, aber insbesondere auch mit den Eltern eng zusammen. Nach einer ausführlichen Diagnostik, die neben Blut - und Gewebeuntersuchungen, den modernen bildgebenden Verfahren (Ultraschall, Röntgen, MRT, Szintigraphie) auch eine genetische Untersuchung umfassen kann, wird fachübergreifend ein Behandlungsplan erstellt. Ein besonderer Schwerpunkt liegt in der Betreuung von Patienten mit seltenen Knochenmarkerkrankungen und Leukämien im Kindesalter sowie mit komplexen Gefäßfehlbildungen. Über große Erfahrung verfügt die Klinik bei der Knochenmark- oder Blutstammzelltransplantation.

Care provisions

This facility offers the following
  • Social / legal advice
  • Genetic counselling
  • Clinical studies / research
  • Diagnostic
  • Therapy
  • Contact person for patients with an unclear diagnosis
    Beschränkt auf unklare Blutkrankheiten, Tumore und Gefäßfehlbildungen.
  • Contact with support groups
    DBA Selbsthilfegruppe

Contact

Sekretariat
0761 27045200
0761 27043010
kinderonkologie@uniklinik-freiburg.de
Website https://www.uniklinik-freiburg.de/cccf/onkologisches-spitzenzentrum/klinik-fuer-paediatrische-haematologie-und-onkologie.html

Address

Mathildenstraße 1
79106 Freiburg
Anfahrt: Heiliggeiststraße 1

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Languages

Germany.png Deutsch
United_Kingdom.png Englisch

Certificates 2

European Reference Network 3

Preview of the assigned diseases 14

Monocytopenia with susceptibility to infections Therapy related acute myeloid leukemia and myelodysplastic syndrome Hypereosinophilic syndrome Maffucci syndrome Rare acquired hemolytic anemia X-linked dyserythropoietic anemia with abnormal platelets and neutropenia Acute myeloid leukemia and myelodysplastic syndromes related to radiation Blue rubber bleb nevus Refractory anemia with excess blasts in transformation Severe congenital hypochromic anemia with ringed sideroblasts Familial cerebral cavernous malformation Tufted angioma Bannayan-Riley-Ruvalcaba syndrome Class I glucose-6-phosphate dehydrogenase deficiency Rare capillary malformation Hereditary isolated aplastic anemia Glomuvenous malformation Unstable hemoglobin disease Neonatal neutropenia Rare venous malformation Transient erythroblastopenia of childhood Congenital dyserythropoietic anemia type III Congenital dyserythropoietic anemia type I Diamond-Blackfan anemia Congenital dyserythropoietic anemia type II Primary acquired pure red cell aplasia T-cell large granular lymphocyte leukemia Autoimmune hemolytic anemia, cold type Acquired von Willebrand syndrome Sickle cell-beta-thalassemia disease syndrome Lymphedema-distichiasis syndrome Hemophilia A Rare arteriovenous malformation Rare thrombotic disorder due to an acquired coagulation factors defect Sickle cell-hemoglobin C disease syndrome Mucocutaneous venous malformations Familial dysfibrinogenemia Familial afibrinogenemia Sickle cell-hemoglobin D disease syndrome X-linked sideroblastic anemia Bernard-Soulier syndrome Immune thrombocytopenia Dyskeratosis congenita Sickle cell-hemoglobin E disease syndrome Hereditary spherocytosis Acquired idiopathic sideroblastic anemia Primary myelofibrosis Mitochondrial myopathy and sideroblastic anemia Non-spherocytic hemolytic anemia due to hexokinase deficiency Felty syndrome Autoimmune hemolytic anemia, warm type Hereditary elliptocytosis Congenital vitamin K-dependent coagulation factors deficiency Parkes Weber syndrome Pearson syndrome Drug-induced autoimmune hemolytic anemia Hemoglobin D disease Autosomal dominant aplasia and myelodysplasia Hereditary persistence of fetal hemoglobin-beta-thalassemia syndrome Rare hemolytic anemia Constitutional sideroblastic anemia Hereditary stomatocytosis Megalencephaly-capillary malformation-polymicrogyria syndrome Alpha-thalassemia Angioosteohypertrophic syndrome Beta-thalassemia Beta-thalassemia major Hemolytic anemia due to glucophosphate isomerase deficiency Hemolytic anemia due to hexose monophosphate shunt and glutathione metabolism anomalies Hemoglobinopathy Glycogen storage disease due to phosphoglycerate kinase 1 deficiency Meige disease Glanzmann thrombasthenia PTEN hamartoma tumor syndrome Hemolytic anemia due to diphosphoglycerate mutase deficiency Inherited acute myeloid leukemia Congenital dyserythropoietic anemia type IV Hemolytic anemia due to an erythrocyte nucleotide metabolism disorder Paroxysmal nocturnal hemoglobinuria Beta-thalassemia intermedia Autoimmune hemolytic anemia Gray platelet syndrome Primary lymphedema Myelodysplastic syndrome Diffuse lymphatic malformation Dominant beta-thalassemia Refractory anemia with excess blasts type 1 Essential thrombocythemia Kostmann syndrome Capillary malformation-arteriovenous malformation Thrombocytopenia-absent radius syndrome Refractory anemia with excess blasts type 2 Rare hereditary thrombophilia Severe congenital neutropenia Hoyeraal-Hreidarsson syndrome Evans syndrome Triose phosphate-isomerase deficiency CLOVES syndrome Rare constitutional aplastic anemia Heparin-induced thrombocytopenia Congenital factor II deficiency Acquired neutropenia Congenital factor V deficiency Congenital factor VII deficiency Congenital factor X deficiency Congenital factor XI deficiency Cutis marmorata telangiectatica congenita Glycogen storage disease due to aldolase A deficiency Congenital factor XII deficiency Delta-beta-thalassemia Congenital factor XIII deficiency Severe hereditary thrombophilia due to congenital protein S deficiency Congenital fibrinogen deficiency Proteus syndrome Severe hereditary thrombophilia due to congenital protein C deficiency Cowden syndrome Rare acquired aplastic anemia Autosomal recessive sideroblastic anemia Sturge-Weber syndrome Heinz body anemia Milroy disease Hemolytic anemia due to glyceraldehyde-3-phosphate dehydrogenase deficiency Gorham-Stout disease X-linked sideroblastic anemia and spinocerebellar ataxia Thrombocytopenia with congenital dyserythropoietic anemia Noonan syndrome-like disorder with juvenile myelomonocytic leukemia Kaposiform hemangioendothelioma Chronic myelomonocytic leukemia Refractory anemia Unclassified myelodysplastic/myeloproliferative disease Immunoglobulin A vasculitis Primary acquired red cell aplasia Hereditary thrombophilia due to congenital antithrombin deficiency Hemolytic anemia due to red cell pyruvate kinase deficiency Von Willebrand disease Congenital dyserythropoietic anemia PHACE syndrome Hemoglobin C disease Hemoglobin E disease Juvenile myelomonocytic leukemia Idiopathic aplastic anemia Deafness-lymphedema-leukemia syndrome Acute myeloid leukemia and myelodysplastic syndromes related to topoisomerase type 2 inhibitor Chronic eosinophilic leukemia Hereditary hemorrhagic telangiectasia Familial platelet disorder with associated myeloid malignancy Cold agglutinin disease Cyclic neutropenia Rare aplastic anemia Refractory anemia with excess blasts Sickle cell anemia Adult idiopathic neutropenia Rare lymphatic malformation Acute panmyelosis with myelofibrosis Neonatal alloimmune neutropenia Intermittent neutropenia Myelodysplastic syndrome associated with isolated del(5q) chromosome abnormality Glycogen storage disease due to muscle phosphofructokinase deficiency Vein of Galen aneurysmal malformation

Provided care options 3

# Contact person
1
Sprechstunde für Gerinnungsstörungen, Hämophiliezentrum
Prof. Dr. med. Barbara Zieger

0761 27045200
Email
Website
Sprechzeiten nach Vereinbarung.
This consultation offers genetic counselling.

2
Sprechstunde für erworbene und angeborene Blutkrankheiten
Dr. Alexander Puzik

0761 27045200
Email
Website
Sprechzeiten: Mo - Fr 9:00 - 12:30 Uhr, Mo und Do 14:00 - 16:30 Uhr, Di und Mi 15:00 - 16:30 Uhr nach Vereinbarung.
This consultation offers genetic counselling.

3
Sprechstunde für Gefäßtumore und Gefäßfehlbildungen
Dr. Friedrich Kapp

0761 27045200
Email
Website
Sprechzeiten nach Vereinbarung.
This consultation offers genetic counselling.

7.8430205583572448.00363439946605Klinik für Pädiatrische Hämatologie und Onkologie am Universitätsklinikum Freiburg
Last updated: 19.10.2022