2018 |
Understanding information sharing about rare diseases: an evaluation of the NIH's website on AATD |
https://doi.org/10.1080/17538068.2018.1453434
|
2018 |
Telephone health services in the field of rare diseases: a qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany |
10.1186/s12913-018-2872-9 |
2018 |
Regulating rare disease: Safely facilitating access to orphan drugs |
Não possui DOI |
2018 |
Reconstructing normality following the diagnosis of a childhood chronic disease: does "rare" make a difference? |
10.1007/s00431-017-3085-7 |
2018 |
Psychological adaptation after peripartum cardiomyopathy: a qualitative study |
10.1016 / j.midw.2018.03.012 |
2018 |
Perspectives of patients and physicians about neuroendocrine tumors. A qualitative study |
10.18632/oncotarget.24347 |
2018 |
Patient reported outcome measures in rare diseases: a narrative review |
https://doi.org/10.1186/s13023-018-0810-x
|
2018 |
Mothers' experience of caring for a child with Early Onset Scoliosis A qualitative descriptive study |
10.1111/jocn.14301 |
2018 |
Long-term perspectives of family quality of life following music therapy with young children on the autism spectrum: a phenomenological study |
10.1093/jmt/thx013 |
2018 |
Inclusion and exclusion in the globalisation of genomics; the case of rare genetic disease in Brazil |
10.1080/13648470.2017.1381230 |
2018 |
Engagement of Canadian Patients with Rare Diseases and Their Families in the Lifecycle of Therapy: A Qualitative Study |
https://doi.org/10.1007/s40271-017-0293-1
|
2018 |
Difficulties in the diagnosis and treatment of rare diseases according to the perceptions of patients, relatives and health care professionals |
10.6061/clinics/2018/e68 |
2018 |
Chasing cures: Rewards and risks for rare disease patient organisations involved in research |
10.1057/s41292-017-0061-4 |
2018 |
Challenges in Research and Health Technology Assessment of Rare DiseaseTechnologies: Report ofthe ISPOR Rare Disease Special InterestGroup |
10.1016/j.jval.2018.03.004 |
2017 |
|
http://dx.doi.org/10.4069/kjwhn.2017.23.4.287
|
2017 |
Zentrales Informationsportal über seltene Erkrankungen |
10.1007/s00103-017-2527-8 |
2017 |
Views of rare disease participants in a UK whole-genome sequencing study towards secondary findings: a qualitative study |
https://doi.org/10.1038/s41431-018-0106-6
|
2017 |
Understanding coping strategies among people living with scleroderma: a focus group study |
10.1080/09638288.2017.1365954 |
2017 |
The patient's experience of primary ciliary dyskinesia: a systematic review |
10.1007/s11136-017-1564-y |
2017 |
The parent perspective Lessons can be learned from listening to the parents of children who are living with rare diseases such as MPS |
Não possui DOI |
2017 |
The Importance of Connection to Others in QoL in MSA and PSP |
https://doi.org/10.1155/2017/5283259
|
2017 |
The (Ir)relevance of Group Size in Health Care Priority Setting: A Reply to Juth |
10.1007/s10728-016-0333-3 |
2017 |
Support needs of people living with Mycobacterium ulcerans (Buruli ulcer) disease in a Ghana rural community: a grounded theory study |
10.1111/ijd.13785 |
2017 |
Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians. |
10.2196 / ijmr.7352 |
2017 |
Review of Rare Diseases Resources: National Organization for Rare Disorders (NORD) Rare Disease Database, NIH Genetic and Rare Diseases Information Center, and Orphanet |
10.1080/15398285.2017.1311613 |
2017 |
Qualificação e provimento de médicos no contexto da Política Nacional de Atenção Integral às Pessoas com Doenças Raras no Sistema Único de Saúde (SUS) |
10.1590/1807-57622016.0211 |
2017 |
Prenatally diagnosed fetal tumors of the head and neck: a systematic review with antenatal and postnatal outcomes over the past 20 years |
10.1515/jpm-2016-0074 |
2017 |
Penis Cancer: The Lived Experience |
10.1097/NCC.0000000000000366 |
2017 |
Patient-Reported Outcome and Observer-Reported Outcome Assessment in Rare Disease Clinical Trials: An ISPOR COA Emerging Good Practices Task Force Report |
10.1016/j.jval.2017.05.015 |
2017 |
Parental Reflections on the Diagnostic Process for Duchenne Muscular Dystrophy: A Qualitative Study. |
http://dx.doi.org/10.1016/j.pedhc.2016.09.002
|
2017 |
Nursing Implications for the Management of Lymphatic Malformation in Children |
10.1177/1043454216646541 |
2017 |
Measuring what matters to rare disease patients - reflections on the work by the IRDiRC taskforce on patient-centered outcome measures |
10.1186/s13023-017-0718-x |
2017 |
Male breast cancer: the survivor's context. |
10.5205/reuol.11077-98857-1-SM.1105201705 |
2017 |
Living with a rare health condition: the influence of a support community and public stigma on communication, stress, and available support |
10.1080/00909882.2017.1288292 |
2017 |
Living with a rare disorder: a systematic review of the qualitative literature |
10.1002/mgg3.315 |
2017 |
Light Chain (AL) Amyloidosis The Journey to Diagnosis |
10.1007/s40271-017-0273-5 |
2017 |
Investigating the Suitability of the Asynchronous, Remote, Community-based Method for Pregnant and New M others |
http://dx.doi.org/10.1145/3025453.3025546
|
2017 |
Integrated Transitions of Care for Patients With Rare Pulmonary Diseases |
10,1097 / NCM.0000000000000198 |
2017 |
Insights from early experience of a Rare Disease Genomic Medicine Multidisciplinary Team: A qualitative study |
10.1038/ejhg.2017.37 |
2017 |
Images of suffering depicted in diaries of family caregivers in the acute stage of necrotising soft tissue infection: A content analysis |
10.1016/j.iccn.2017.02.004 |
2017 |
Gestational gigantomastia: Asystematic review of case reports |
10.4103/jmh.JMH_92_16 |
2017 |
For the Sake of Justice: Should We Prioritize Rare Diseases? |
10,1007 / s10728-014-0284-5 |
2017 |
Felty's Syndrome: A Qualitative Case Study |
Não possui DOI |
2017 |
Family experience with osteogenesis imperfecta type 1: the most distressing situations |
10.1080/09638288.2017.1334236 |
2017 |
Factors Influencing the Use of a Mobile App for Reporting Adverse Drug Reactions and Receiving Safety Information: A Qualitative Study |
10.1007/s40264-016-0494-x |
2017 |
Experience of mothers of children with Williams syndrome |
https://doi.org/10.31299/hrri.53.1.9
|
2017 |
Disclosures of Cystic Fibrosis-Related Information to Romantic Partners |
doi.org/10.1177/1049732317697 |
2017 |
Diagnosis of rare diseases under focus: impacts for Canadian patients |
10.1007/s12687-017-0320-x |
2017 |
Central information portal on rare diseases: Implementation of quality- and needs-oriented information management |
10.1007/s00103-017-2527-8 |
2017 |
Breast Cancer in Men: What Makes it Different from that in Women? |
10,1007 / s11839-017-0636-4 |
2017 |
Beyond hormone replacement: quality of life in women with congenital hypogonadotropic hypogonadism |
10.1530/EC-17-0095 |
2017 |
An Evidence-Based, Community-Engaged Approach to Develop an Interactive Deliberation Tool for Pediatric Neuromuscular Trials |
10.1007/s10897-017-0190-8 |
2017 |
A window into living with an undiagnosed disease: Illness narratives from the Undiagnosed Diseases Network |
10.1186/s13023-017-0623-3 |
2017 |
"Rare place where I feel normal": Perceptions of a social support conference among parents of and people with Moebius syndrome |
https://doi.org/10.1108/AIA-01-2016-0002
|
2017 |
"I had to change so much in my life to live with my new limitations": Multimorbid patients' descriptions of their most bothersome chronic conditions |
10.1177/1742395317699448 |
2016 |
Was it worth it? Patients' perspectives on the perceived value of genomic-based individualized medicine |
10.1007/s12687-016-0260-x |
2016 |
Tuberous Sclerosis Australia: a case study of a maturing patient-driven organisation |
https://doi.org/10.1108/AIA-01-2016-0002
|
2016 |
The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions |
10.1089/jpm.2015.0464 |
2016 |
The role of the multidisciplinary health care team in the management of patients with Marfan syndrome |
10.2147/JMDH.S93680 |
2016 |
The Patient Educator Presentation in Dental Education: Reinforcing the Importance of Learning About Rare Conditions |
|
2016 |
The involvement of patient organisations in rare disease research: a mixed methods study in Australia |
10.1186/s13023-016-0382-6 |
2016 |
The Cure PSP Care Guide: A Telephonic Nursing Intervention for Individuals and Families Living With Progressive Supranuclear Palsy |
10.1097/JNN.0000000000000194 |
2016 |
Síndrome de Mowat-Wilson: história de vida de la fortaleza de una madre |
https://doi.org/10.1016/j.sedene.2016.06.002
|
2016 |
Seeking and sharing: why the pulmonary fibrosis community engages the web 2.0 environment |
10.1186/s12890-016-0167-7 |
2016 |
Representation of illness in Familial Amyloidotic Polyneuropathy Portuguese Association newspaper: A documental study |
10.1111/nhs.12240 |
2016 |
Reference centres for adults with rare and complex cancers - Policy recommendations to improve the organisation of care in Belgium |
10.1016/j.respe.2015.11.006 |
2016 |
Quantitative and qualitative insights into the experiences of children with Rett syndrome and their families |
10.1007/s10354-016-0494-6 |
2016 |
Providing Palliative Care in Rare Pediatric Diseases: A Case Series of Three Children with Congenital Disorder of Glycosylation |
10.1089/jpm.2016.0232 |
2016 |
Primary Ciliary Dyskinesia: First Health-related Quality of Life Measures for Pediatric Patients |
10.1513/AnnalsATS.201603-198OC |
2016 |
Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review |
10.1007/s40271-016-0213-9 |
2016 |
Patients' Perspectives and Experiences Living with Systemic Sclerosis: A Systematic Review and Thematic Synthesis of Qualitative Studies. |
10.3899/jrheum.151309 |
2016 |
Patient-reported outcomes in rare lysosomal storage diseases: Key informant interviews and a systematic review protocol |
10.1017/S0266462316000568 |
2016 |
Patient voice in rare disease drug development and endpoints |
https://doi.org/10.1177/2168479016671559
|
2016 |
Patient perspectives on whole-genome sequencing for undiagnosed diseases |
10.2217/pme-2016-0050 |
2016 |
Parents' experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS) |
10.1186/s13023-016-0521-0 |
2016 |
Parent Recommendations for Family Functioning With Prader-Willi Syndrome: A Rare Genetic Cause of Childhood Obesity |
10.1016/j.pedn.2015.11.001 |
2016 |
Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health |
10.1111/hex.12253 |
2016 |
Necessidades prioritárias referidas pelas famílias de pessoas com doenças raras |
http://dx.doi.org/10.1590/0104-07072016000590015
|
2016 |
Living with idiopathic basal ganglia calcification 3: a qualitative study describing the lives and illness of people diagnosed with a rare neurological disease. |
10.1186 / s40064-016-3390-z |
2016 |
Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition. |
http://dx.doi.org/10.1016/j.ijnurstu.2016.07.007
|
2016 |
Informing the midwife on rare genetic disorders and their effects on mothers breastfeeding - a mixed methods study |
Não possui DOI |
2016 |
Illness perception and information behaviour of patients with rare chronic diseases |
Não possui DOI |
2016 |
Health activism and the logic of connective action. A case study of rare disease patient organisations |
10.1080/1369118X.2016.1154587 |
2016 |
Functioning and Challenges in Equality and Accessibility Among People with Short Stature |
10.3233/978-1-61499-684-2-402 |
2016 |
Expectation versus Reality: The Impact of Utility on Emotional Outcomes after Returning Individualized Genetic Research Results in Pediatric Rare Disease Research, a Qualitative Interview Study |
10.1371/journal.pone.0153597 |
2016 |
Epidermolysis Bullosa An Insider's Perspective to a Rare Genetic Connective Tissue Disorder |
10.1097/JDN.0000000000000202 |
2016 |
Engaging Participants in Rare Disease Research: A Qualitative Study of Duchenne Muscular Dystrophy |
http://dx.doi.org/10.1016/j.clinthera.2016.04.001
|
2016 |
Easing the Burden: Describing the Role of Social, Emotional and Spiritual Support in Research Families with Li-Fraumeni Syndrome. |
10.1007/s10897-015-9905-x |
2016 |
Early support and early intervention as a support for the child and their family based on the biographies of parents of children with rare genetic diseases |
10.15557/PiPK.2016.0031 |
2016 |
Does labelling a rare cancer diagnosis 'good' affect the patient's experience of treatment and recovery? |
10.1111/ecc.12258 |
2016 |
Doenças neuromusculares raras: um retrato da judicialização no Tribunal Regional Federal da 1ª Região |
http://dx.doi.org/10.17566/ciads.v5i1.229
|
2016 |
Diagnosing primary ciliary dyskinesia: An international patient perspective |
10.1183/13993003.02018-2015 |
2016 |
Childhood lymphoedema and 'Lymphaletics': overcoming barriers |
10.12968/bjon.2016.25.13.718 |
2016 |
Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups |
10.1007/s10545-015-9881-1 |
2016 |
Anticipated stigma and blameless guilt: Mothers' evaluation of life with the sex-linked disorder, hypohidrotic ectodermal dysplasia (XHED) |
http://dx.doi.org/10.1016/j.socscimed.2016.04.027
|
2016 |
A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders |
10.3233/NRE-161383 |
2016 |
'Marginalised malignancies': A qualitative synthesis of men's accounts of living with breast cancer |
http://dx.doi.org/10.1016/j.socscimed.2015.11.032
|
2016 |
"I Feel Lucky" - Gratitude Among Young Adults with Phenylketonuria (PKU) |
10.1007/s10897-015-9931-8 |
2015 |
Young adults' experiences of living with recessive limb-girdle muscular dystrophy from a salutogenic orientation: an interview study |
10.3109/09638288.2014.998782 |
2015 |
You don't get told anything, they don't do anything and nothing changes'. Medicine as a resource and constraint in progressive ataxia |
10.1111/hex.12016 |
2015 |
Using Online Health Communication to Manage Chronic Sorrow: Mothers of Children with Rare Diseases Speak |
http://dx.doi.org/10.1016/j.pedn.2014.09.013
|
2015 |
Translating rare-disease therapies into improved care for patients and families: what are the right outcomes, designs, and engagement approaches in health-systems research? |
10.1038/gim.2015.42 |
2015 |
Towards government-funded special biomedical research programs to combat rare diseases in China |
10.5582/bst.2015.01048 |
2015 |
Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel-Lindau disease |
10.1038/ejhg.2014.44 |
2015 |
The Supportive Care Needs of Parents With a Child With a Rare Disease: A Qualitative Descriptive Study |
http://dx.doi.org/10.1016/j.pedn.2015.10.022
|
2015 |
The Imperative for Patient-Centred Research to Develop Better Quality Services in Rare Diseases |
10.1007/s40271-015-0113-4 |
2015 |
Struggling to be part of Swedish society: Strategies used by immigrants with late effects of polio |
10.3109/11038128.2015.1057222 |
2015 |
Significado de la enfermedad, experiencias y expectativas de pacientes con mielofibrosis |
https://doi.org/10.5209/rev_PSIC.2015.v12.n2-3.51009
|
2015 |
Reimbursement of Drugs for Rare Diseases through the Public Healthcare System in Canada: Where Are We Now? |
10.12927/hcpol.2015.24360 |
2015 |
Rare Disease Terminology and Definitions-A Systematic Global Review: Report of the ISPOR Rare Disease Special Interest Group. |
http://dx.doi.org/10.1016/j.jval.2015.05.008
|
2015 |
Policy recommendations for rare disease centres of expertise |
10.1016/j.evalprogplan.2015.03.006 |
2015 |
Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study |
10.1007/s40271-014-0085-9 |
2015 |
Participation in society for people with a rare diagnosis |
http://dx.doi.org/10.1016/j.dhjo.2014.07.004
|
2015 |
Parent decision-making around the genetic testing of children for germline TP53 mutations |
10.1002/cncr.29027 |
2015 |
Orphan Drugs: Rare Diseases, Rare Funding |
Não possui DOI |
2015 |
Living With and Treating Rare Diseases: Experiences of Patients and Professional Health Care Providers. |
10.1177/1049732315570116 |
2015 |
La comunicación en la red de pacientes con enfermedades raras en España |
10.4185/RLCS-2015-1065 |
2015 |
Identifying the Benefits and Risks of Emerging Treatments for Idiopathic Pulmonary Fibrosis: A Qualitative Study |
10.1007/s40271-014-0081-0 |
2015 |
How Narrative Journalistic Stories Can Communicate the Individual's Challenges of Daily Living with Amyotrophic Lateral Sclerosis |
10.1007/s40271-014-0088-6 |
2015 |
General and Health Information Challenges of Patients With Rare Diseases: The Importance of Health Information Provision and Web Sites for Locating Rare Disease Resources |
https://doi.org/10.1080/15323269.2015.1014762
|
2015 |
Experiences of parents caring for infants with rare scalp mass as identified through a disease-specific blog |
10.3122/jabfm.2015.06.150080 |
2015 |
Emotional Experiences among Siblings of Children with Rare Disorders |
10.1093/jpepsy/jsv022 |
2015 |
Doenças raras: itinerário diagnóstico e terapêutico das famílias de pessoas afetadas |
http://dx.doi.org/10.1590/1982-0194201500067
|
2015 |
Development and Use of New Therapeutics for Rare Diseases: Views from Patients, Caregivers, and Advocates |
10.1007/s40271-014-0096-6 |
2015 |
Developing a Patient-Directed Policy Framework for Managing Orphan and Ultra-Orphan Drugs Throughout Their Lifecycle |
10.1007/s40271-014-0108-6 |
2015 |
Cleansing of Body and Spirit |
10.1089/jpm.2015.0342 |
2015 |
Balancing needs as a family caregiver in Huntington's disease: a qualitative interview study |
10.1111/hsc.12174 |
2015 |
An Asia Pacific Alliance for Rare Diseases |
10.1007/s40271-014-0103-y |
2015 |
Adopting a Sustainable Community of Practice Model when Developing a Service to Support Patients with Epidermolysis Bullosa (EB): A Stakeholder-Centered Approach |
10.1007/s40271-014-0097-5 |
2015 |
A Remarkable Experience of God, Shaping Us as a Family": Parents' Use of Faith Following Child's Rare Disease Diagnosis |
10.1080/08854726.2014.988525 |
2015 |
A National Approach to Reimbursement Decision-Making on Drugs for Rare Diseases in Canada? Insights from Across the Ponds |
10.12927/hcpol.20 |
2015 |
"People are all about appearances": A focus group of teenagers with Moebius Syndrome |
10,1177 / 1359105313517277 |
2015 |
'We're all carrying a burden that we're not sharing': a qualitative study of the impact of cutaneous T-cell lymphoma on the family |
10.1111/bjd.13583 |
2015 |
'We had to change to single beds because I itch in the night': a qualitative study of the experiences, attitudes and approaches to coping of patients with cutaneous T-cell lymphoma |
10.1111/bjd.13732 |
2014 |
The work of living with a rare cancer: multiple myeloma |
10.1111/jan.12430 |
2014 |
The impact of health care professionals' service orientation on patients' innovative behavior |
10.1097/HMR.0b013e31829d534c |
2014 |
Shaping and managing the course of a child's disease: Parental experiences with osteogenesis imperfecta |
http://dx.doi.org/10.1016/j.dhjo.2014.03.002
|
2014 |
Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases |
10.1136/medethics-2013-101648 |
2014 |
Rare Diseases Research and Practice |
10.1159/000363670 |
2014 |
Perceptions of Lethal Fetal Abnormality among Perinatal Professionals and the Challenges of Neonatal Palliative Care |
10.1089/jpm.2014.0023 |
2014 |
Parental Uncertainty in Illness: Managing Uncertainty Surrounding an 'Orphan' Illness |
10.1016/j.pedn.2014.01.008 |
2014 |
Malformación de Arnold-Chiari. La pérdida de la sonrisa |
http://dx.doi.org/10.4321/S1132-12962014000300013
|
2014 |
Living with encapsulating peritoneal sclerosis (eps): the patient's perspective |
10.3747/pdi.2013.00053 |
2014 |
Life on hold: the experience of living with neuromyelitis optica |
10.3109/09638288.2013.833301 |
2014 |
Investigation of Life Experiences of Women with Scleroderma |
10.1007/s11195-013-9334-4 |
2014 |
Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support |
10.1186/1750-1172-9-83 |
2014 |
Getting stuck with LAM: patients perspectives on living with Lymphangioleiomyomatosis |
10.1186 / 1477-7525-12-79 |
2014 |
From 'politics of numbers' to 'politics of singularisation': Patients' activism and engagement in research on rare diseases in France and Portugal |
0,1057 / biosoc.2014.4 |
2014 |
Familial amyloid polyneuropathy: elaboration of a therapeutic patient education programme, ''EdAmyl'' |
10.3109/13506129.2014.941463 |
2014 |
Exploring quality of life in Italian patients with rare disease: A computer-aided content analysis of illness stories |
10.1080/13548506.2013.793372 |
2014 |
Expectations and experiences of investigators and parents involved in a clinical trial for Duchenne/Becker muscular dystrophy |
10.1177/1740774513512726 |
2014 |
Diagnóstico neonatal e recomposições temporais: o caso da fibrose cística |
10.3917 / rac.022.0047 |
2014 |
Development of a Provisional Model to Improve Transitional Care for Female Adolescents with a Rare Genital Malformation as an Example for Orphan Diseases |
http://dx.doi.org/10.1155/2014/913842
|
2014 |
Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters |
10.1111/jspn.12078 |
2014 |
Cómo recuerdan los pacientes la comunicación del diagnóstico. A propósito de quince testimonios relacionados con enfermedades poco frecuentes |
http://dx.doi.org/10.6035/clr.2014.13.9
|
2014 |
Cognitive and Affective Uses of a Thoracic Outlet Syndrome Facebook Support Group |
10,1080 / 10410236.2013.800830 |
2014 |
Bridging Worlds, Breaking Rules: Clinician Perspectives on Transitioning Young People with Perinatally Acquired HIV Into Adult Care in a Low Prevalence Setting |
10.1089/apc.2013.0346 |
2014 |
A relational understanding of sibling experiences of children with rare life-limiting conditions: : Findings from a qualitative study |
10.1177/1367493513485825 |
2014 |
"I Want You to Save My Kid!": Illness Management Strategies, Access, and Inequality at an Elite University Research Hospital |
10,1177 / 0022146514544172 |
2013 |
The impact of severe osteogenesis imperfecta on the lives of young patients and their parents - a qualitative analysis |
10.1186/1471-2431-13-153 |
2013 |
The Effect of Market-Based Economic Factors on the Adoption of Orphan Drugs Across Multiple Countries |
10.1177/2168479012471945 |
2013 |
Ro52 autoantibody-positive women's experience of being pregnant and giving birth to a child with congenital heart block |
10.1016/j.midw.2011.10.008 |
2013 |
Prioritizing treatment of rare diseases: A survey of preferences ofNorwegian doctors |
http://dx.doi.org/10.1016/j.socscimed.2013.06.019
|
2013 |
Patient experiences of having a neuroendocrine tumour: A qualitative study |
10.1016/j.ejon.2013.02.003 |
2013 |
Pachyonychia Congenita Project a Partnership of Patient and Medical Professional |
Não possui DOI |
2013 |
Key factors impacting on diagnosis and treatment for vulvar cancer for Indigenous women: findings from Australia |
10.1007/s00520-013-1859-7 |
2013 |
From Qualitative Work to Intervention Development in Pediatric Oncology Palliative Care Research |
10.1177/1043454213487434 |
2013 |
Assisting a child with tuberous sclerosis complex (TSC): a qualitative deep analysis of parents' experience and caring needs |
10.1136 / bmjopen-2013-003707 |