bainbridge ropers syndrome icd 10 code

Reimbursement claims with a date of service on or after October 1, 2015 require the use of ICD-10-CM codes. 1779 Massachusetts Avenue Over 90% An autosomal recessive disorder characterized by retinitis pigmentosa; polydactyly; obesity; mental retardation; hypogenitalism; renal dysplasia; and short stature. He was diagnosed with Bainbridge-Ropers syndrome (BRS), a rare genetic motor planning disorder. 11 Zesp Bainbridge'a-Ropers'a Validation of the lithuanian version of the self-evaluation of negative symptoms scale (SNS). While the OMIM database is open to the public, users seeking information about a personal 75 Currently GARD aims to provide the following information for this disease: Population Estimate: This section is currently in development. Short description: Oth congenital malformation syndromes, NEC, This is the American ICD-10-CM version of, Codes from this chapter are not for use on maternal records, code(s) to identify all associated manifestations. (2016) reported 3 unrelated patients with BRPS. ICD-10-CM Diagnosis Code S14.147D ; Search Results. All had delayed psychomotor development with moderate to profound intellectual disability and delayed walking. Entry - #615485 - BAINBRIDGE-ROPERS SYNDROME; BRPS - OMIM P.O. Novel splicing mutation in the ASXL3 gene causing Bainbridge-Ropers syndrome. Select the true statements about Millie and her syndrome. The mutation happens randomly and is not usually inherited from parents. No patient had the typical 'BOS posture' of elbow and wrist flexion, or of myopia or trigonocephaly. 4. "De novo truncating mutations in ASXL3 are associated with a novel clinical phenotype with similarities to Bohring-Opitz syndrome", "What is a gene mutation and how do mutations occur? A de novo nonsense mutation in ASXL3 shared by siblings with Bainbridge-Ropers syndrome. Cause: GARD does not currently have information about the cause of this condition. These 2023 ICD-10-CM codes are to be used for discharges occurring from October 1, 2022 through September 30, 2023 and for patient encounters occurring from October 1, 2022 through September 30, 2023. An important gene associated with Bainbridge-Ropers Syndrome is ASXL3 (ASXL Transcriptional Regulator 3), and among its related pathways/superpathways are Metabolism of proteins and Malignant pleural mesothelioma. The patients were ascertained from the Deciphering Developmental Disorders (DDD) project, and the mutations were found by whole-exome sequencing and confirmed by Sanger sequencing. When Della Calder was just one year old, Caitlin Calder noticed troubling issues with her daughter's early development. Changes in these genes are associated with Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome. A case of Bainbridge-Ropers syndrome with breath holding spells and intractable epilepsy: challenges in diagnosis and management. Please join your colleagues by making a Most also had autistic features and 11 were in a special needs school. A rare, genetic, syndromic intellectual disability disorder with a variable phenotypic presentation typically characterized by microcephaly, severe feeding difficulties, failure to thrive, severe global development delay that frequently results in absent/poor speech, moderate to severe intellectual disability and hypotonia. De Novo Truncating Variants in ASXL2 Are Associated with a Unique and Recognizable Clinical Phenotype. Corrigendum to "Childhood-onset generalized epilepsy in Bainbridge-Ropers syndrome" [Epilepsy Res. our revenue stream. All Rights Reserved. Affected individuals may also display autistic features. seizure control) as warranted. In this context, annotation back-references refer to codes that contain: "Present On Admission" is defined as present at the time the order for inpatient admission occurs conditions that develop during an outpatient encounter, including emergency department, observation, or outpatient surgery, are considered POA. A (n) chromosome is a long DNA molecule wrapped around proteins and wound tightly. [Full Text: https://doi.org/10.1136/jmedgenet-2016-104360], Srivastava, A., Ritesh, K. C., Tsan, Y.-C., Liao, R., Su, F., Cao, X., Hannibal, M. C., Keegan, C. E., Chinnaiyan, A. M., Martin, D. M., Bielas, S. L. Richards SACMG Laboratory Quality Assurance Committee. Balasubramanian et al. The disorder is due to loss of function mutations in ASXL3 gene (18q12.1). Suite 500 Other frequent gastrointestinal features include gastroesophageal reflux and constipation. Brunner syndrome is a rare genetic disorder associated with a mutation in the MAOA gene.It is characterized by lower than average IQ (typically about 85), problematic impulsive behavior (such as pyromania, hypersexuality and violence), sleep disorders and mood swings. Bainbridge-Ropers syndrome - About the Disease - Genetic and Rare References/Resources Thank you, I will keep looking back for responses. Decoding the byssus fabrication by spatiotemporal secretome analysis of scallop foot. About ASXL3/Bainbridge-Ropers Syndrome (BRS) - ASXL Rare Research Currently GARD aims to provide the following information for this disease: This section is currently in development. of the OMIM's operating expenses go to salary support for MD and PhD Affiliated tissues include brain, eye and smooth muscle, and related phenotypes are global developmental delay and feeding difficulties in infancy. Symptoms of global development delay include hypotonia, delay in achieving independent sitting and walking, and marked language delay. This chromosomal change is sometimes written as 4p-. March 14, 2018 Autism, Autism Spectrum Disorder, Bainbridge-Ropers Syndrome, Dr. Robin Kochel, Genetics, Nicole Blanton, SPARK for autism. Unfortunately, it is not free to produce. [citation needed], There is no currently known treatment or cure for this condition. The 2022 ICD-10-CM files below contain information on the ICD-10-CM updates for FY 2022. We are determined to keep this website freely (2017) identified 12 different de novo heterozygous nonsense or frameshift mutations in the ASXL3 gene (see, e.g., 615115.0006 and 615115.0008). -the traits caused by Millie's syndrome are Mendelian traits By continuing to use this website, you agree to the Terms of Service & Privacy Policy, A Podcast For The Rare Disease Community, Policy Statements & Letters to Policymakers. Bainbridge-ropers syndrome caused by loss-of-function variants in ASXL3 These cells showed significantly increased levels of H2AK119Ub1, indicating that this mutation disrupts the normal activity of the polycomb repressive deubiquitination (PR-DUB) complex, which functions to remove the monoubiquitin from lysine-119 of histone H2A (H2AK119Ub1), thus playing a role in chromatin remodeling and transcriptional regulation. Compound heterozygous mutation of the ASXL3 gene causes autosomal recessive congenital heart disease. De novo truncating mutations in ASXL3 are associated with a novel clinical phenotype with similarities to Bohring-Opitz syndrome. and by advanced students in science and medicine. Case report : a novel ASXL3 gene variant in a Sudanese boy. 2023 ICD-10-CM Diagnosis Code Q87.89: Other specified congenital [2], Genetic changes that are described as de novo (new) mutations can be either hereditary or somatic. Three patients had a marfanoid habitus with arachnodactyly, tall stature, pes planus, and scoliosis. On this Wikipedia the language links are at the top of the page across from the article title. Balasubramanian M, Willoughby J, Fry AE, Weber A, Firth HV, Deshpande C, Berg JN, Chandler K, Metcalfe KA, Lam W, Pilz DT, Tomkins S. Delineating the phenotypic spectrum of Bainbridge-Ropers syndrome: 12 new patients with de novo, heterozygous, loss-of-function mutations in ASXL3 and review of published literature. Bainbridge, M. N., Hu, H., Muzny, D. M., Musante, L., Lupski, J. R., Graham, B. H., Chen, W., Gripp, K. W., Jenny, K., Wienker, T. F., Yang, Y., Sutton, V. R., Gibbs, R. A., Ropers, H. H. The petroleum ether extract of Brassica rapa L. induces apoptosis of lung adenocarcinoma cells via the mitochondria-dependent pathway. 73 Homozygous B3GAT3 mutations have been associated with short stature, skeletal deformities, and congenital heart defects. Bainbridge-Ropers syndrome is inherited in an autosomal dominant manner. Patient organizations can help patients and families connect. PDF Bainbridge-Ropers Syndrome - Simons Searchlight Q87.89 is a billable/specific ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purposes. Bainbridge-Ropers Syndrome ( BRPS ) - MalaCards The 2023 ICD-10-CM files below contain information on the ICD-10-CM updates for FY 2023. Rozpowszechnienie: nieznane. This is the American ICD-10-CM version of Q79.8 - other international versions of ICD-10 Q79.8 may differ. NOTE: OMIM is intended for use primarily by physicians and other professionals concerned with genetic disorders, by genetics researchers, ASXL3 De Novo Variant-Related Neurodevelopmental Disorder Presenting as Dystonic Cerebral Palsy. Fibroblasts derived from 1 of the patients with a frameshift mutation in the 5-prime cluster region (c.1448dupT; 615115.0005) showed about a 50% decrease in ASXL1 mRNA and protein levels, consistent with haploinsufficiency. Wikipedia: We describe for the first time a novel heterozygous splice site mutation in B3GAT3 contributing to severe short stature, growth hormone (GH) deficiency, recurrent ketotic . A gene is a set of biochemical instructions that tell a cell how to manufacture a protein. Bainbridge-Ropers Syndrome is caused by a de novo (new) mutation of the ASXL3 gene. I would love to see what help anyone can provide. Modeling Bainbridge-Ropers Syndrome in Xenopus laevis Embryos This is an informational website run by families with information about Bainbridge-Ropers Syndrome. Mar 31, 2016. De novo frameshift mutation in ASXL3 in a patient with global developmental delay, microcephaly, and craniofacial anomalies. Many collaborate with medical experts and researchers.Services of patient organizations differ, but may include: Clinical studies are part of clinical research and at the heart of all medical advances, including rare diseases. ICD-10-CM instructional notes specify that any underlying cause (e.g., complications following infusion and therapeutic injection [ T80.89 -], complications of transplanted organs and tissue [ T86.- ]) should be coded before using these new D89.83 - codes. You can help Wikipedia by expanding it. Breath-holding spells with choreathetoid movements have been previously described. 5: 11, 2013. Associated manifestations should also be coded. ASXL3/Bainbridge-Ropers Syndrome For more information, visit GARD. [Analysis of clinical feature and genetic variants in two Chinese pedigrees affected with Bainbridge-Ropers syndrome]. Bainbridge-Ropers syndrome - Wikipedia Most patients presented in early infancy with feeding difficulties, poor overall growth, relative microcephaly, and hypotonia. In other cases, the mutation occurs in the fertilized egg shortly after the egg and sperm cells unite. A variant form of a gene is called a (n) allele. De novo truncating mutations in ASXL3 are associated with a novel clinical phenotype with similarities to Bohring-Opitz syndrome. The two best things you can do to advance research into Bainbridge-Ropers Syndrome are, participate in the registry and biobank and. ClinicalTrials.gov, an affiliate of NIH, provides current information on clinical research studies in the United States and abroad. [Bainbridge-Ropers syndrome with ASXL3 gene variation in a child and This article about a disease, disorder, or medical condition is a stub. Bainbridge-Ropers syndrome is a very rare genetic disorder characterized by abnormalities including more Search Genome Med. Suite 310 Two patients were nonambulatory and 9 were nonverbal. Given the multisystemic involvement, multidisciplinary follow-up is needed and should include neurological follow up, developmental assessments, physiotherapy (particularly for joint laxity and musculoskeletal issues), feeding interventions for those with persistent feeding issues, and ophthalmologic follow up for patients with strabismus and/or refractive error. Functional studies of the variants and studies of patient cells were not performed, but all were predicted to result in a loss of function. In 2022, the ICD codes will change again with the addition of two numbersone that precedes the letter and one that comes at the end. Bainbridge-Ropers syndrome - National Organization for Rare Disorders We hope you find it helpful, and thanks for stopping by! Her brother, Archer, wanted to. (2013) identified a de novo heterozygous 4-bp deletion in the ASXL3 gene resulting in frameshift and premature termination (g.31319343_31319346delACAG, Thr659FsTer41). 04/10/2018 Edit History: joanna : 08/20/2021 joanna : 08/20/2021 joanna : 05/11/2018 ckniffin : 04/11/2018 . OMIM: 57 Bainbridge-Ropers syndrome (BRPS) is a developmental disorder characterized by delayed psychomotor development, severe intellectual disability with poor or absent speech, hypotonia, feeding difficulties, poor growth, and dysmorphic facial features (summary by Srivastava et al., 2016). De novo dominant ASXL3 mutations alter H2A deubiquitination and transcription in Bainbridge-Ropers syndrome. It is also important to counsel affected families about the possibility of recurrence due to germline mosaicism. Genet. Enroll in databases to allow researchers from participating institutions to find you. H02382 Bainbridge-Ropers syndrome Human diseases in ICD-11 classification [BR:br08403] 20 Developmental anomalies Multiple developmental anomalies or syndromes . BainbridgeRopers syndrome is a very rare genetic disorder characterized by abnormalities including severe psychomotor development, feeding problems, severe postnatal growth delays, intellectual disabilities, and skeletal abnormalities. Dotychczas opisano na wiecie kilkanacioro dzieci. It was identified in fourteen males from one family in 1993. You are using an out of date browser. Genet. Clinical Synopsis - #615485 - BAINBRIDGE-ROPERS SYNDROME; BRPS - OMIM Joint laxity and ulnar deviation of wrists are also frequently observed. The patients had common, if variable, dysmorphic features, including prominent forehead, narrow head, hypertelorism, down- or upslanting palpebral fissures, strabismus, high-arched eyebrows, long tubular nose, prominent nasal bridge, broad or bulbous nasal tip, low columella, open mouth with everted lower lip, high-arched palate, and crowded teeth. Note: Electronic Article. MalaCards based summary: Bainbridge-Ropers syndrome is a very rare genetic disorder characterized by abnormalities including severe psychomotor development, feeding problems, severe postnatal growth delays, intellectual disabilities, and skeletal abnormalities. I know it is some type of gene mutation and I found lots of information never could really decide the best code to be used. (2017) noted that 5 of the identified mutations occurred within the original cluster region, whereas 7 occurred 3-prime to this region, suggesting a second cluster region between codons 1045 and 1444. The core mission of Leo's Lighthouse is to find an effective therapy, and eventually a cure, for Bainbridge-Ropers Syndrome (BRS). There are no ASXL-specific therapeutics or treatments to address the underlying cause of Bainbridge-Ropers Syndrome. Researchers from participating institutions use the database to search for and invite patients or healthy volunteers who meet their study criteria to participate. Please contact GARD if you need help finding additional information or resources on rare diseases, including clinical studies. Delineating the phenotypic spectrum of Bainbridge-Ropers syndrome: 12 new patients with de novo, heterozygous, loss-of-function mutations in ASXL3 and review of published literature . Clinical features include dysmorphic facies, developmental delay, intellectual disability, autistic traits, hypotonia, failure to thrive, seizures and hyperventilation. These findings highlighted a role for dynamic regulation of H2A ubiquitination in development and disease. Our Information Specialists are available to you by phone or by filling out our contact form. A rare developmental disorder characterized by underdevelopment or absence of the pectoralis muscle in one side of the chest, usually associated with ipsilateral cutaneous syndactyly, and ipsilateral breast and nipple hypoplasia. It was firstly reported in 2013 by Bainbridge . Bainbridge-Ropers syndrome (BRPS) is a developmental disorder characterized by delayed psychomotor development, severe intellectual disability with poor or absent speech, hypotonia, feeding difficulties, poor growth, and dysmorphic facial features (summary by Srivastava et al., 2016). There has been limited research on Bainbridge-Ropers Syndrome and the other two ASXL syndromes (ASXL1/Bohring-Opitz Syndrome and ASXL2/Shashi-Pena Syndrome). Phone: 203-263-9938 PURA syndrome - About the Disease - Genetic and Rare Diseases Bainbridge-Ropers syndrome (BRPS; OMIM:615485) was first described in 2013 and is characterized by failure to thrive, feeding problems, hypotonia, intellectual disability (ID), autism, postnatal growth retardation, abnormal facial features with arched eyebrows, anteverted nares and delays in language acquisition [ 1 ]. 1. Donations are tax deductible to the fullest extent of the law. The documents contained in this web site are presented for information purposes only. They all have Bainbridge-Ropers syndrome. 57 News. Danbury, CT 06810 Objective: To investigate the clinical manifestations and genetic features of a child with Bainbridge-Ropers syndrome caused by ASXL3 gene variation and review the literature. Leo's Lighthouse 54: 537-543, 2017. View CNBC interview with NORDs Peter Saltonstall and Boston Childrens Dr. Olaf Bodamer emphasizing the importance of investment in rare diseases. Background Bainbridge-Ropers syndrome is caused by monoallelic ASXL3 variants on chromosome 18. Copyright 1996-2023 , Weizmann Institute of Science. Resource(s) for Medical Professionals and Scientists on This Disease: This information is currently in development. [Full Text: https://doi.org/10.1186/gm415], Balasubramanian, M., Willoughby, J., Fry, A. E., Weber, A., Firth, H. V., Deshpande, C., Berg, J. N., Chandler, K., Metcalfe, K. A., Lam, W., Pilz, D. T., Tomkins, S., DDD Study. BAP1/ASXL1 recruitment and activation for H2A deubiquitination. A human homolog of Additional sex combs, ADDITIONAL SEX COMBS-LIKE 1, maps to chromosome 20q11. Many rare diseases have limited information. Downs SM, van Dyck PC, Rinaldo P, et al. About ; Statistics . Ada Hamosh, MD, MPH 615485 - BAINBRIDGE-ROPERS SYNDROME; BRPS Toggle navigation . We also believe there are many people living undiagnosed. [citation needed], This condition was first described by Bainbridge et al in 2013.[2]. Differential diagnosis includes other syndromes with moderate-severe intellectual disability and poor language. The MalaCards human disease database index: See all MalaCards categories (disease lists), Congenital malformations, deformations and chromosomal abnormalities, Other specified congenital malformation syndromes affecting multiple systems, Congenital malformation syndromes predominantly affecting facial appearance, congenital hemidysplasia with ichthyosiform erythroderma and limb defects, contractures, pterygia, and spondylocarpotarsal fusion syndrome 1a, attention deficit-hyperactivity disorder 3, cerebellar atrophy, developmental delay, and seizures, epilepsy with generalized tonic-clonic seizures, core binding factor acute myeloid leukemia, congenital heart defects, dysmorphic facial features, and intellectual developmental disorder, cerebellar hypoplasia/atrophy, epilepsy, and global developmental delay, autosomal dominant intellectual developmental disorder, microcephaly 11, primary, autosomal recessive, microcephaly 5, primary, autosomal recessive, RUNX1 interacts with co-factors whose precise effect on RUNX1 targets is not known, abnormal cerebral white matter morphology, Clinical Registry for ASXL-Related Disorders and Disorders of Chromatin Remodeling, Activator Of Transcription And Developmental Regulator AUTS2, O-Linked N-Acetylglucosamine (GlcNAc) Transferase, Progesterone Immunomodulatory Binding Factor 1, NM_030632.3(ASXL3):c.1210C>T (p.Gln404Ter), NM_030632.3(ASXL3):c.1396C>T (p.Gln466Ter), NM_030632.3(ASXL3):c.1978_1981del (p.Asp660fs), NM_030632.3(ASXL3):c.1422dup (p.Glu475Ter), NM_030632.3(ASXL3):c.1192_1195del (p.Thr398fs), NM_030632.3(ASXL3):c.1682C>A (p.Ser561Ter), NM_030632.3(ASXL3):c.1961dup (p.Ser654_Ser655insTer), NM_030632.3(ASXL3):c.3106C>T (p.Arg1036Ter), NM_030632.3(ASXL3):c.3464C>A (p.Ser1155Ter), NM_030632.3(ASXL3):c.3364C>T (p.Gln1122Ter), NM_030632.3(ASXL3):c.4330C>T (p.Arg1444Ter), NM_030632.3(ASXL3):c.1448dup (p.Thr484fs), NM_030632.3(ASXL3):c.4144C>T (p.Gln1382Ter), NM_030632.3(ASXL3):c.1500del (p.Glu500fs), NM_030632.3(ASXL3):c.1351C>T (p.Gln451Ter), NM_030632.3(ASXL3):c.1849_1850del (p.Ser617fs), NM_030632.3(ASXL3):c.2471C>T (p.Pro824Leu), NM_030632.3(ASXL3):c.1884_1885del (p.Gly629fs), NM_030632.3(ASXL3):c.3330_3333dup (p.Ala1112fs), NM_030632.3(ASXL3):c.3494_3495del (p.Asn1164_Cys1165insTer), NM_030632.3(ASXL3):c.3827_3830dup (p.Asn1278fs), GRCh37/hg19 3p24.1-23(chr3:30863773-31433693)x1, NM_030632.3(ASXL3):c.4322C>G (p.Ser1441Ter), NM_030632.3(ASXL3):c.4164dup (p.Thr1389fs), NM_030632.3(ASXL3):c.1354del (p.Glu452fs), NM_030632.3(ASXL3):c.4211_4212del (p.Thr1404fs), NM_030632.3(ASXL3):c.1738G>T (p.Glu580Ter), NM_030632.3(ASXL3):c.4904dup (p.Gln1636fs), NM_030632.3(ASXL3):c.3964C>T (p.Gln1322Ter), NM_030632.3(ASXL3):c.4399C>T (p.Arg1467Ter), NM_030632.3(ASXL3):c.1535T>A (p.Leu512Ter), NM_030632.3(ASXL3):c.1189C>T (p.Gln397Ter), NM_030632.3(ASXL3):c.4219_4220del (p.Leu1407fs), NM_030632.3(ASXL3):c.4087_4088delinsG (p.Met1363fs), NM_030632.3(ASXL3):c.1821del (p.Ala606_Cys607insTer), NM_030632.3(ASXL3):c.4509_4513dup (p.Val1505fs), NM_030632.3(ASXL3):c.3621dup (p.Pro1208fs), NM_030632.3(ASXL3):c.1444del (p.Ser482fs), NM_030632.3(ASXL3):c.3049del (p.Ser1017fs), NM_030632.3(ASXL3):c.5819del (p.Gly1940fs), NM_030632.3(ASXL3):c.1479_1480del (p.Pro494fs), NM_030632.3(ASXL3):c.1939dup (p.Thr647fs), NM_030632.3(ASXL3):c.1207C>T (p.Gln403Ter), NM_030632.3(ASXL3):c.3315_3318del (p.Thr1106fs), NM_030632.3(ASXL3):c.3137_3144del (p.Gly1046fs), NM_030632.3(ASXL3):c.1269C>A (p.Cys423Ter), NM_030632.3(ASXL3):c.1864dup (p.Cys622fs), NM_030632.3(ASXL3):c.4899T>A (p.Tyr1633Ter), positive regulation of transcription by RNA polymerase II, peroxisome proliferator activated receptor binding. Treatment of Self-Injury in Bainbridge-Ropers Syndrome: Replication and Extensions of Behavioral Assessments. registered for member area and forum access. Participants with a disease may participate to help others, but also to possibly receive the newest treatment and additional care from clinical study staff. BRS is a result of an ASXL3 gene mutation, located on chromosome 18. For example, X98.6 (ICD-10 code) will become 0X98.60. Functional proteomics of the epigenetic regulators ASXL1, ASXL2 and ASXL3: a convergence of proteomics and epigenetics for translational medicine. Q79.8 is a billable/specific ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purposes. The only specialty specific source of rare disease education and information. In 12 unrelated patients with BRPS, Balasubramanian et al. Intellectual disability ranges from moderate to severe. Comorbid Psychiatric Aspects of Bainbridge-Ropers Syndrome. Donations are an important UniProtKB/Swiss-Prot: Less than 100 cases have been reported in literature and databases to date. ICD-10-CM Diagnosis Codes for Audiology and Speech-Language Pathology Its our mission to change that. Hum. Only comments written in English can be processed. 25: 597-608, 2016. Our partnerships do not influence our editorial policy, © everythingpossible / Fotolia Orphanet version 5.54.0 - Last updated: 1900 Crown Colony Drive Take steps toward getting a diagnosis by working with your doctor, finding the right specialists, and coordinating medical care. If this is your first visit, be sure to check out the. SNOMEDCT: 773400009; impaired intellectual development, severe to profound, nonspecific white matter abnormalities on brain imaging. Brunner syndrome - Wikipedia [Full Text], Balasubramanian, M., Willoughby, J., Fry, A. E., Weber, A., Firth, H. V., Deshpande, C., Berg, J. N., Chandler, K., Metcalfe, K. A., Lam, W., Pilz, D. T., Tomkins, S., DDD Study. A Unique Physical Therapy Approach for my Son with Bainbridge-Ropers For all other comments, please send your remarks via contact us. Clinical application of whole-exome sequencing across clinical indications. Caitlin Calder, a parent of a child with Bainbridge-Ropers Syndrome, created the Bainbridge-Ropers Syndrome and ASXL3 Families support group as a private Facebook page in 2014 with just a handful of members.

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bainbridge ropers syndrome icd 10 code