SE-ATLAS

Mapping of Health Care Providers
for People with Rare Diseases

Zentrum für seltene Erkrankungen am Clementine Kinderhospital

Description of facility

Director / Spokesperson
PD Dr. med. Kay Latta
Information
Care facility for children
Description
Das Zentrum für Seltene Erkrankungen am Clementine Kinderhosptital ist eine Einrichtung für Kinder und Jugendliche in Frankfurt am Main. Die Diagnose von Krankheiten, die als selten (1 : 2000 Menschen) eingestuft werden, ist oftmals schwierig und langwierig. Das resultiert unter anderem daher, dass bei seltenen Erkrankungen häufig mehrere Organsysteme betroffen sind. Demzufolge sind spezialisierte Zentren dringend notwendig, um interdisziplinäre Therapieansätze umsetzten zu können. In den letzten 10 Jahren hat das Clementine Kinderhospital mit seinen Spezialambulanzen insgesamt mehrere Hundert Kinder und Jugendliche mit seltenen Erkrankungen diagnostiziert und behandelt. Durch die interdisziplinären Ärzteteams ist das Zentrum in der Lage auf sehr hohem Niveau die Expertise für viele seltene Erkrankungen anzubieten. Das Zentrum bietet hierbei eine zentrale Anlaufstelle bei bekannter Diagnose den richtigen Experten bzw. die richtige Einrichtung zur Behandlung der Erkrankung zu finden.

Nephrologische Ambulanz:
Das oberste Ziel der nephrologischen Ambulanz ist es, die Nierenfunktion der Patienten zu erhalten.
Die Ambulanz arbeitet zudem eng mit dem „KfH - Kuratorium für Dialyse und Nierentransplantation e. V.“ zusammen, das auf dem Gelände des Krankenhauses angesiedelt ist. Gemeinsam wird die Versorgung aller nierenkranker Kinder im ambulanten und stationären Bereich sichergestellt. Bei Harnwegsfehlbildungen werden notwendige Operationen in der Klinik für Neugeborenen-, Kinderchirurgie und -urologie des Bürgerhospitals durchgeführt.

Rheumatologische Ambulanz:
Kinder aller Altersgruppen können an chronischem Rheuma erkranken. Die Therapie erfolgt dabei vorwiegend ambulant. Zusätzlich besteht die Möglichkeit, dass Patienten tageweise in dem Krankenhaus aufgenommen werden. Dies ist vor allem dann der Fall, wenn eine erste Diagnose gestellt oder bestimmte Behandlungsverfahren angewandt werden, die ein sofortiges Nachhause gehen nicht erlauben. Dies können z.B. Infusionsbehandlungen oder Gelenkpunktionen sein. Bei schweren rheumatischen Erkrankungen ist eine stationäre Therapie möglich. Bei der Behandlung rheumakranker Patienten sind verschiedene Fachdisziplinen und Therapeuten gefragt. Neben Ärzten und Pflegekräften kümmern sich auch die Mitarbeiter der physiotherapeutischen Abteilung ebenso wie – in speziellen Fällen – Fachkräfte für eine psychologische und ergotherapeutische Mitbetreuung um die Patienten.

Consultation hours

nach Vereinbarung.

Care provisions

This facility offers the following
  • Participation in registries
  • Social / legal advice
  • Genetic counselling
  • Clinical studies / research
  • Diagnostic
  • Therapy
  • Contact person for patients with an unclear diagnosis
  • Contact with support groups
    Alport Selbsthilfegruppe e.V.

Contact

Dr. Claudia Kuss
069 949920
069 94992302
zse@ckhf.de
Website https://www.clementine-kinderhospital.de/medizin-pflege/zentrum-fuer-seltene-erkrankungen

Address

Theobald-Christ-Str. 16
60316 Frankfurt am Main

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Languages

Germany.png Deutsch
United_Kingdom.png Englisch
France.png Französisch
Spain.png Spanisch
Turkey.png Türkisch

Certificates 1

Preview of the assigned diseases 8

PAPA syndrome Renal-hepatic-pancreatic dysplasia HANAC syndrome Autosomal dominant proximal renal tubular acidosis Liddle syndrome Galloway-Mowat syndrome Distal renal tubular acidosis Idiopathic steroid-sensitive nephrotic syndrome with minimal change Oculocerebrorenal syndrome of Lowe Idiopathic steroid-sensitive nephrotic syndrome with focal segmental hyalinosis Idiopathic steroid-sensitive nephrotic syndrome with diffuse mesangial proliferation Oligoarticular juvenile idiopathic arthritis with anti-nuclear antibodies Familial idiopathic steroid-resistant nephrotic syndrome with focal segmental hyalinosis Familial idiopathic steroid-resistant nephrotic syndrome with diffuse mesangial proliferation Familial idiopathic steroid-resistant nephrotic syndrome with diffuse mesangial sclerosis Familial idiopathic steroid-resistant nephrotic syndrome with minimal changes Sporadic idiopathic steroid-resistant nephrotic syndrome with focal segmental hyalinosis Sporadic idiopathic steroid-resistant nephrotic syndrome with minimal changes Oligoarticular juvenile idiopathic arthritis without anti-nuclear antibodies Sporadic idiopathic steroid-resistant nephrotic syndrome with diffuse mesangial sclerosis Sporadic idiopathic steroid-resistant nephrotic syndrome with diffuse mesangial proliferation Rare pediatric rheumatologic disease Rheumatoid factor-negative juvenile idiopathic arthritis with anti-nuclear antibodies Aicardi-Goutières syndrome Rheumatoid factor-negative juvenile idiopathic arthritis without anti-nuclear antibodies Renal agenesis Hypocomplementemic urticarial vasculitis NLRP12-associated hereditary periodic fever syndrome Muckle-Wells syndrome Alport syndrome Alström syndrome DITRA Nephrogenic diabetes insipidus-intracranial calcification-short stature-facial dysmorphism syndrome Vasculitis due to ADA2 deficiency Ventriculomegaly-cystic kidney disease Unilateral multicystic dysplastic kidney Juvenile idiopathic arthritis Behçet disease Neonatal inflammatory skin and bowel disease PFAPA syndrome STING-associated vasculopathy with onset in infancy Systemic sclerosis CREST syndrome Eosinophilic granulomatosis with polyangiitis Cherubism Autoimmune interstitial lung disease-arthritis syndrome Tumor necrosis factor receptor 1 associated periodic syndrome Sterile multifocal osteomyelitis with periostitis and pustulosis Takayasu arteritis Autoinflammatory syndrome of childhood Blau syndrome Diffuse cutaneous systemic sclerosis Limited cutaneous systemic sclerosis Limited systemic sclerosis Immunoglobulin A vasculitis NLRP3-associated autoinflammatory disease Secondary vasculitis Rare systemic or rheumatological disease of childhood Kawasaki disease Mevalonate kinase deficiency Postinfectious vasculitis Hereditary periodic fever syndrome Pyogenic autoinflammatory syndrome of childhood Periodic fever syndrome of childhood Granulomatous autoinflammatory syndrome of childhood Familial Mediterranean fever Hyperimmunoglobulinemia D with periodic fever Unclassified autoinflammatory syndrome of childhood Chronic nonbacterial osteomyelitis/Chronic recurrent multifocal osteomyelitis Unexplained periodic fever syndrome of childhood Pediatric systemic lupus erythematosus Proteasome-associated autoinflammatory syndrome Familial Chilblain lupus Juvenile polymyositis Granulomatosis with polyangiitis USP18 deficiency CANDLE syndrome STAT3-related early-onset multisystem autoimmune disease Rheumatoid factor-negative polyarticular juvenile idiopathic arthritis Oligoarticular juvenile idiopathic arthritis Systemic-onset juvenile idiopathic arthritis CINCA syndrome Infantile onset panniculitis with uveitis and systemic granulomatosis Overlapping connective tissue disease Rheumatoid factor-positive polyarticular juvenile idiopathic arthritis Drug-induced vasculitis Enthesitis-related juvenile idiopathic arthritis Periodic fever-infantile enterocolitis-autoinflammatory syndrome Hereditary pediatric Behçet-like disease Unclassified vasculitis Familial cold urticaria Unexplained long-lasting fever/inflammatory syndrome Juvenile dermatomyositis Anti-neutrophil cytoplasmic antibody-associated vasculitis Pseudohypoparathyroidism type 1A Senior-Loken syndrome Hypertension due to gain-of-function mutations in the mineralocorticoid receptor Bilateral multicystic dysplastic kidney Pseudohypoparathyroidism type 1C Atypical hemolytic uremic syndrome Renal tubular dysgenesis of genetic origin Adult familial nephronophthisis-spastic quadriparesia syndrome BOR syndrome Pierson syndrome Bartter syndrome Senior-Boichis syndrome Dent disease Methylcobalamin deficiency type cblG Fibronectin glomerulopathy Autosomal recessive distal renal tubular acidosis Congenital hydronephrosis Genetic steroid-resistant nephrotic syndrome Primary hypomagnesemia with hypercalciuria and nephrocalcinosis with severe ocular involvement Idiopathic hypercalciuria Severe oculo-renal-cerebellar syndrome Immunoglobulin-mediated membranoproliferative glomerulonephritis Hyperuricemia-pulmonary hypertension-renal failure-alkalosis syndrome RHYNS syndrome C3 glomerulopathy Primary hypomagnesemia with secondary hypocalcemia C3 glomerulonephritis Cystinuria Microscopic polyangiitis Autosomal dominant polycystic kidney disease Autosomal recessive polycystic kidney disease Denys-Drash syndrome Genetic primary hypomagnesemia Nephrogenic diabetes insipidus REN-related autosomal dominant tubulointerstitial kidney disease Pseudohypoaldosteronism type 1 Lipoprotein glomerulopathy Joubert syndrome with oculorenal defect Neonatal diabetes-congenital hypothyroidism-congenital glaucoma-hepatic fibrosis-polycystic kidneys syndrome Sporadic idiopathic steroid-resistant nephrotic syndrome with collapsing glomerulopathy Congenital and infantile nephrotic syndrome MYH9-related disease Genetic thrombotic microangiopathy Sporadic idiopathic steroid-resistant nephrotic syndrome Pseudohypoparathyroidism Primary hypomagnesemia with hypercalciuria and nephrocalcinosis without severe ocular involvement Interstitial lung disease-nephrotic syndrome-epidermolysis bullosa syndrome LAMB2-related infantile-onset nephrotic syndrome Primary hypomagnesemia with hypercalciuria and nephrocalcinosis Genetic primary hypomagnesemia with hypocalciuria Frasier syndrome Autosomal dominant polycystic kidney disease type 1 with tuberous sclerosis Genetic primary hypomagnesemia with normocalciuria Pseudohypoparathyroidism without Albright hereditary osteodystrophy Autosomal dominant tubulointerstitial kidney disease Gitelman syndrome Hypotonia-cystinuria syndrome Pseudohypoaldosteronism type 2A Basement membrane disease 2p21 microdeletion syndrome Action myoclonus-renal failure syndrome MUC1-related autosomal dominant tubulointerstitial kidney disease UMOD-related autosomal dominant tubulointerstitial kidney disease WAGR syndrome Dense deposit disease Pseudohypoparathyroidism type 1B Hereditary renal hypouricemia Hereditary xanthinuria Pseudohypoparathyroidism type 2 Atypical hemolytic uremic syndrome with I factor anomaly Genetic cystic renal disease Infantile nephronophthisis Juvenile nephronophthisis Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome Primary hyperoxaluria type 1 Xanthinuria type I Primary hyperoxaluria Primary hyperoxaluria type 3 Xanthinuria type II Bartter syndrome type 3 Antenatal Bartter syndrome Autosomal recessive proximal renal tubular acidosis Nephrogenic syndrome of inappropriate antidiuresis Hypertrophic cardiomyopathy with kidney anomalies due to mitochondrial DNA mutation Autosomal dominant distal renal tubular acidosis Cystinuria type B Cystinuria type A Renal dysplasia Dent disease type 2 Hypotonia-cystinuria type 1 syndrome Dent disease type 1 Atypical hypotonia-cystinuria syndrome Atypical hemolytic uremic syndrome with thrombomodulin anomaly Primary renal tubular acidosis Idiopathic steroid-sensitive nephrotic syndrome Adenine phosphoribosyltransferase deficiency Familial juvenile hyperuricemic nephropathy type 1 Primary glomerular disease Pseudohypoaldosteronism type 2D Infantile nephropathic cystinosis Hepatic fibrosis-renal cysts-intellectual disability syndrome Juvenile nephropathic cystinosis Renal dysplasia, bilateral Renal dysplasia, unilateral Pseudohypoaldosteronism type 2E X-linked Alport syndrome-diffuse leiomyomatosis Rapidly progressive glomerulonephritis Unspecified juvenile idiopathic arthritis Autosomal recessive infantile hypercalcemia Mevalonic aciduria Proximal renal tubular acidosis Dominant hypophosphatemia with nephrolithiasis or osteoporosis Pseudopseudohypoparathyroidism Polyarticular juvenile idiopathic arthritis Megacystis-microcolon-intestinal hypoperistalsis syndrome Pseudohypoaldosteronism type 2 Rare pediatric vasculitis Type 1 interferonopathy of childhood Psoriasis-related juvenile idiopathic arthritis Nephronophthisis Hemolytic uremic syndrome with DGKE deficiency Isolated autosomal dominant hypomagnesemia, Glaudemans type Fetal lower urinary tract obstruction Early-onset progressive leukoencephalopathy-central nervous system calcification-deafness-visual impairment syndrome Familial primary hypomagnesemia with normocalciuria and normocalcemia Autosomal dominant primary hypomagnesemia with hypocalciuria Osteopetrosis with renal tubular acidosis Bartter syndrome with hypocalcemia Rare genetic renal disease Primary Fanconi renotubular syndrome Genetic renal tubular disease Multicystic dysplastic kidney Congenital nephrotic syndrome, Finnish type Familial steroid-resistant nephrotic syndrome with sensorineural deafness Bartter syndrome type 4 X-linked Alport syndrome Autosomal recessive Alport syndrome Autosomal dominant Alport syndrome Renal pseudohypoaldosteronism type 1 Pseudohypoparathyroidism with Albright hereditary osteodystrophy Generalized pseudohypoaldosteronism type 1 Pseudohypoaldosteronism type 2B Pseudohypoaldosteronism type 2C Atypical hemolytic uremic syndrome with C3 anomaly Atypical hemolytic uremic syndrome with MCP/CD46 anomaly Atypical hemolytic uremic syndrome with H factor anomaly Atypical hemolytic uremic syndrome with B factor anomaly Atypical hemolytic uremic syndrome with anti-factor H antibodies Congenital thrombotic thrombocytopenic purpura Late-onset nephronophthisis Nephropathy secondary to a storage or other metabolic disease Prune belly syndrome Primary hyperoxaluria type 2 Distal renal tubular acidosis with anemia Autosomal dominant intermediate Charcot-Marie-Tooth disease type E Renal coloboma syndrome Familial steroid-resistant nephrotic syndrome with adrenal insufficiency

Provided care options 2

# Contact person
1
Nephrologische Ambulanz
PD Dr. med K. Latta

069 94992217
Website
Sprechzeiten nach Vereinbarung.

2
Rheumatologische Ambulanz
Dr. med. C. Rietschel

069 94992231
Website
Sprechzeiten nach Vereinbarung.

8.6983576180053150.114628749999994Zentrum für seltene Erkrankungen am Clementine Kinderhospital
Last updated: 08.11.2022