We facilitate better cures for people living with a Rare or Complex Disease by enabling health care professionals to connect, collaborate and learn from each other.
We do all possible to protect patient privacy and have implemented following
1) In built Patient Consent forms
2) Clear case posting guidelines and Ability to flag any inappropriate content
Access to this digital platform is FREE for medical professionals
We are a group of people who are linked in different ways due to these Rare Diseases. We want to capitalize on this energy, passion and value driven from personal life experiences to make meaningful difference in lives of people living with rare disease
This project is inspired by the personal experience of parents (originally from Pakistan but living in Belgium) where their son born with Anorectal malformations was medically treated very well by Prof Miserez (UZ Leuven Hospital). Parents in collaboration with Prof Miserez and APSP (association of pediatric surgeons of Pakistan) launched this initiative aiming to connect health care professionals to facilitate better diagnose and treatment outcomes for people living with Anorectal malformations and other rare disease.
Initial focus is on Aneorectal Malformations and Hirschprung Diseases.
Over the past few years, our platform has made significant strides in the field of rare disease diagnosis and treatment. Here are some of our achievements so far
Pakistan
Afghanistan
www.soma-ev.de
www.aimar.eu.png
ERN eUROGEN
www.arm-net.eu
UZ Leuven Hospital
Past President of Belgian Association of Pediatric Surgery
Liaquat Hospital Karachi
President Eelect Association of Pediatric Surgeons Pakistan
French Medical Institute Kabul
President Afghanistan Association of Pediatric Surgeons
Children Hospital Lahore
Past President Association of Pediatric Surgeons Pakistan
Al Nasir Hospital Quetta
President Select Association of Pediatric Surgeons Pakistan
KT Hospital Peshawar
Past President Association of Pediatric Surgeons Pakistan
National Institute of Child Health Karachi
Medical University Vienna
Member EU ARM Network, Co-founder Helping Hands for Anorectal Malformations
Ege University Medical School Izmir
Member EU ARM Network
Ege University Medical School Izmir
Chairman Div. of Pediatric Urology
Ruhr-University Bochum
Director, Department of Pediatric Surgery
Medical University Graz
Chairman, Department of Pediatric and Adolescent Surgery
Surgeon Medical University Graz
Co Chair ARM-net, Pediatric Surgeon Medical University Graz
Children's Clinic Nuremberg
Department of Pediatric Surgery and Pediatric Urology
University of ULM Medical Center
Lead Consultant Department of Pediatric Surgery
LMU Munich Germany, Member ERN eUROGEN
Chairman Pediatric Surgery
Ca Foncello Regional Hospital Treviso
Chief in Pediatric Surgery, Ex Chair ARM net
Coordinator ERN eUROGEN
The Children Hospital Alessandria
Member ERN eUROGEN
University Medical Center Utrecht
Pediatric Surgeon Specialized in ARM and HD, Member ARM net
University Medical Center Mainz
Consultant Pediatric Surgeony, Member ARM net
Chairwoman SOMA
German Patient and Parent Association for ARM, HD-HSCR and EC
Consultant Pediatric Surgery
Chair ARM net
We facilitate better cures for people living with a Rare or Complex Disease by enabling health care professionals to connect, collaborate and learn from each other.
You can access it on the web for free.
Only Health care professionals (doctors / Peds surgeons) upon signing up / registering and accepting “terms and conditions” can have access to this web portal.
Only registered and verified healthcare professionals, and / or Admin (on behalf of healthcare professional) can post the medical case on this web portal.
Information (name, country, institutional email address, hospital name) provided during registration would be used to validate and verify the account. Only once an account is validated and verified then Healthcare professional can have full access to web portal.
