After being launched for 1 year, the RareConnect team updates the EuMGa, the European Myasthenia Gravis Federation on progress made in the MG community.
During the EURORDIS Membership meeting 2016 in Edinburgh, Scotland the RareConnect team presented progress on the platform along with highlighting how rare disease patient groups can take part in the project.
How to Build a Thriving Community on Your WebsiteDNN
In 2014, The COPD Foundation launched a branded online community on their website.
They named it COPD360social and saw 1,000 member sign-ups in the first month alone. Today, COPD360social has over 7,000 members and engagement is through the roof.
View this presentation to learn how Vincent Malanga (CIO) and Sara Latham (Communications Director) planned and executed their community strategy.
You’ll hear how they engaged with influencers before the launch (and what they asked them to do) and how they generated off-the-charts engagement, all without spending a dollar on outbound marketing.
After view this presentation, you’ll have actionable ideas to increase user engagement on your own website.
Workshop 2 - Centres of expertise & Networks of experts
"Presentation of the concept, definitions and
terminology"
Samantha Parker, E-IMD, OrphanEurope
During the EURORDIS Membership meeting 2016 in Edinburgh, Scotland the RareConnect team presented progress on the platform along with highlighting how rare disease patient groups can take part in the project.
How to Build a Thriving Community on Your WebsiteDNN
In 2014, The COPD Foundation launched a branded online community on their website.
They named it COPD360social and saw 1,000 member sign-ups in the first month alone. Today, COPD360social has over 7,000 members and engagement is through the roof.
View this presentation to learn how Vincent Malanga (CIO) and Sara Latham (Communications Director) planned and executed their community strategy.
You’ll hear how they engaged with influencers before the launch (and what they asked them to do) and how they generated off-the-charts engagement, all without spending a dollar on outbound marketing.
After view this presentation, you’ll have actionable ideas to increase user engagement on your own website.
Workshop 2 - Centres of expertise & Networks of experts
"Presentation of the concept, definitions and
terminology"
Samantha Parker, E-IMD, OrphanEurope
Patient entrepeneurs, pop up uni, 9am, 3 september 2015NHS England
Expo is the most significant annual health and social care event in the calendar, uniting more NHS and care leaders, commissioners, clinicians, voluntary sector partners, innovators and media than any other health and care event.
Expo 15 returned to Manchester and was hosted once again by NHS England. Around 5000 people a day from health and care, the voluntary sector, local government, and industry joined together at Manchester Central Convention Centre for two packed days of speakers, workshops, exhibitions and professional development.
This year, Expo was more relevant and engaging than ever before, happening within the first 100 days of the new Government, and almost 12 months after the publication of the NHS Five Year Forward View. It was also a great opportunity to check on and learn from the progress of Greater Manchester as the area prepares to take over a £6 billion devolved health and social care budget, pledging to integrate hospital, community, primary and social care and vastly improve health and well-being.
More information is available online: www.expo.nhs.uk
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...jangeissler
A snapshot of EUPATI: Why the educated patient is so vital to success in clinical trials - Jan Geissler - EUPATI Director - presented at DIA EuroMeeting on 6 March 2013 in Amsterdam
The Networked Patient Group: How technology changes the face of patient advocacyjangeissler
"The Networked Patient Group: How technology changes the face of patient advocacy", presented by Jan Geissler (@jangeissler) at European Patient Innovation Summit on 4 Oct 2016
RareConnect has been collecting the dates of different global and national awareness days for different rare diseases in this blog post: http://blog.rareconnect.org/tip-of-the-week/rare-disease-awareness-days/
Many patient groups ask us how to start an awareness day for their individual disease. This presentations discusses best practices in starting an awareness day for your community. Highlights of what works to bring together your community for a disease awareness day.
Watch the entire webinar that this presentation was part of here: http://blog.rareconnect.org/best-practices/rareconnect-webinar-how-to-start-an-awareness-day-for-your-rare-disease/
The past decade has seen a growing appreciation of the importance of private healthcare providers as the first, and often only, source of healthcare in many countries. This has led to a range of interventions aimed at engaging these providers to deliver standardized public health goods and services. One partnership modality, called clinical social franchising, applies commercial principles to achieve this goal.
In 2012, 74 clinical social franchising programs were operational in 40 countries. The programmes included networks of 66,000+ providers that delivered franchised clinical and health services for family planning; maternal, newborn and child health; and to diagnose and treat TB, malaria and/or HIV. Millions of people received services. The scale and overall health impact of these programs is documented in the Clinical Social Franchising Compendium, 2013 (http://bit.ly/10nVT25).
This approach to engaging private purveyors of health and clinical services is gaining traction worldwide. The evidence base for this approach is also increasing, with studies now addressing health impact, quality of care, new usership of formal medical services, cost-effectiveness and equity.
This webinar will explain how clinical social franchising works, how it is being adapted in different countries and the evidence for its relevance as a public health approach.
The International Alliance of Dermatology Patient Organizations (IADPO) is a non-profit organization made up of skin patient associations from around the world.
IADPO works with skin patient associations so that their campaigns for improved medical care, greater public understanding and increased research will improve the lives of people who live with skin disease and reach a wider audience.
Will global HCPs networks become communities of choice for rare-disease speci...Len Starnes
Analysis of the role of global HCPs' social networks in the management of rare diseases. Case study of the G-Med global neuroendocrine tumour specialist community
The critical crossroads of animal, human, and environmental health: Scaling u...ILRI
Presented by Mark Mitchell, Kristina Roesel, Bernard Bett, Lasha Avaliani, Bedasa Eba and Christine Jost at a Livestock and Livelihoods Webinar series, 21 September 2021
CORD Rare Drug Conference: June 8-9, 2022
Global, International, and National Rare Disease Networks
WHO-RDI Global Rare Disease Network - Matt Bolz-Johnson, EURORDIS
EUPATI’s framework on Informing the “health-interested” public about medicine...Nowgen
"EUPATI's framework on Informing the “health-interested” public objectively and comprehensively about medicines R&D", presented by Jan Geissler at the EUPATI 2014 Workshop in Warsaw
Boston Children's Hospital: Taming the Wild West, presented by Lily VautourSocialMedia.org Health
In her SocialMedia.org Health case study presentation, Boston Children's Hospital's Lily Vautour explains how they manage a network of 20+ program-specific Facebook pages and private groups with a small team.
She shares seven helpful tips to manage an affiliated page network without losing your brand.
Tumor Necrosis Factor (TNF) Receptor-Associated Periodic Fever Syndrome (TRAPS), also known as Familial Hibernian Fever (FHF) is a rare, dominantly-inherited autoinflammatory disease that is caused by a mutation in the TNFRSF1A gene. The RareConnect team worked with moderators from the TRAPS community and a TRAPS medical professional to create this 30 question poll on living with the disease in order to understand the experiences of people living with this rare disease. The poll was open on RareConnect.org for 6 months and was sent to all members of the TRAPS community on RareConnect. 66 people completed the poll in English, German, French, Spanish, and Italian. The charts below is the summary data from those participants responses. For more visit: https://www.rareconnect.org/en/community/traps-syndrome/article/living-with-traps-poll
More Related Content
Similar to Update on the Mysasthenia Gravis community on RareConnect.org
Patient entrepeneurs, pop up uni, 9am, 3 september 2015NHS England
Expo is the most significant annual health and social care event in the calendar, uniting more NHS and care leaders, commissioners, clinicians, voluntary sector partners, innovators and media than any other health and care event.
Expo 15 returned to Manchester and was hosted once again by NHS England. Around 5000 people a day from health and care, the voluntary sector, local government, and industry joined together at Manchester Central Convention Centre for two packed days of speakers, workshops, exhibitions and professional development.
This year, Expo was more relevant and engaging than ever before, happening within the first 100 days of the new Government, and almost 12 months after the publication of the NHS Five Year Forward View. It was also a great opportunity to check on and learn from the progress of Greater Manchester as the area prepares to take over a £6 billion devolved health and social care budget, pledging to integrate hospital, community, primary and social care and vastly improve health and well-being.
More information is available online: www.expo.nhs.uk
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...jangeissler
A snapshot of EUPATI: Why the educated patient is so vital to success in clinical trials - Jan Geissler - EUPATI Director - presented at DIA EuroMeeting on 6 March 2013 in Amsterdam
The Networked Patient Group: How technology changes the face of patient advocacyjangeissler
"The Networked Patient Group: How technology changes the face of patient advocacy", presented by Jan Geissler (@jangeissler) at European Patient Innovation Summit on 4 Oct 2016
RareConnect has been collecting the dates of different global and national awareness days for different rare diseases in this blog post: http://blog.rareconnect.org/tip-of-the-week/rare-disease-awareness-days/
Many patient groups ask us how to start an awareness day for their individual disease. This presentations discusses best practices in starting an awareness day for your community. Highlights of what works to bring together your community for a disease awareness day.
Watch the entire webinar that this presentation was part of here: http://blog.rareconnect.org/best-practices/rareconnect-webinar-how-to-start-an-awareness-day-for-your-rare-disease/
The past decade has seen a growing appreciation of the importance of private healthcare providers as the first, and often only, source of healthcare in many countries. This has led to a range of interventions aimed at engaging these providers to deliver standardized public health goods and services. One partnership modality, called clinical social franchising, applies commercial principles to achieve this goal.
In 2012, 74 clinical social franchising programs were operational in 40 countries. The programmes included networks of 66,000+ providers that delivered franchised clinical and health services for family planning; maternal, newborn and child health; and to diagnose and treat TB, malaria and/or HIV. Millions of people received services. The scale and overall health impact of these programs is documented in the Clinical Social Franchising Compendium, 2013 (http://bit.ly/10nVT25).
This approach to engaging private purveyors of health and clinical services is gaining traction worldwide. The evidence base for this approach is also increasing, with studies now addressing health impact, quality of care, new usership of formal medical services, cost-effectiveness and equity.
This webinar will explain how clinical social franchising works, how it is being adapted in different countries and the evidence for its relevance as a public health approach.
The International Alliance of Dermatology Patient Organizations (IADPO) is a non-profit organization made up of skin patient associations from around the world.
IADPO works with skin patient associations so that their campaigns for improved medical care, greater public understanding and increased research will improve the lives of people who live with skin disease and reach a wider audience.
Will global HCPs networks become communities of choice for rare-disease speci...Len Starnes
Analysis of the role of global HCPs' social networks in the management of rare diseases. Case study of the G-Med global neuroendocrine tumour specialist community
The critical crossroads of animal, human, and environmental health: Scaling u...ILRI
Presented by Mark Mitchell, Kristina Roesel, Bernard Bett, Lasha Avaliani, Bedasa Eba and Christine Jost at a Livestock and Livelihoods Webinar series, 21 September 2021
CORD Rare Drug Conference: June 8-9, 2022
Global, International, and National Rare Disease Networks
WHO-RDI Global Rare Disease Network - Matt Bolz-Johnson, EURORDIS
EUPATI’s framework on Informing the “health-interested” public about medicine...Nowgen
"EUPATI's framework on Informing the “health-interested” public objectively and comprehensively about medicines R&D", presented by Jan Geissler at the EUPATI 2014 Workshop in Warsaw
Boston Children's Hospital: Taming the Wild West, presented by Lily VautourSocialMedia.org Health
In her SocialMedia.org Health case study presentation, Boston Children's Hospital's Lily Vautour explains how they manage a network of 20+ program-specific Facebook pages and private groups with a small team.
She shares seven helpful tips to manage an affiliated page network without losing your brand.
Tumor Necrosis Factor (TNF) Receptor-Associated Periodic Fever Syndrome (TRAPS), also known as Familial Hibernian Fever (FHF) is a rare, dominantly-inherited autoinflammatory disease that is caused by a mutation in the TNFRSF1A gene. The RareConnect team worked with moderators from the TRAPS community and a TRAPS medical professional to create this 30 question poll on living with the disease in order to understand the experiences of people living with this rare disease. The poll was open on RareConnect.org for 6 months and was sent to all members of the TRAPS community on RareConnect. 66 people completed the poll in English, German, French, Spanish, and Italian. The charts below is the summary data from those participants responses. For more visit: https://www.rareconnect.org/en/community/traps-syndrome/article/living-with-traps-poll
This presentation was given on July 28th during the Pitt Hopkins UK support group meeting in Manchester, UK.
Join the Pitt Hopkins syndrome community here:
https://www.rareconnect.org/en/community/pitt-hopkins-syndrome/understand
Highlights from Rare Disease Day 2011 which took place on Feb 28. An international awareness day coordinated at the international level by EURORDIS (Rare Diseases Europe)
Workshop 7 - Brainstorming & Policy Development session: Prevention
"EUROCAT Study on Prevention of Congenital Anomalies"
Dr. Domenica Taruscio, ISS Italy
Workshop 3 - Registries
"Outcome of the RD Task Force and EPPOSI Workshop"
on registries, Tsveta Schyns, ENRAH
Eurordis Membership Meeting 2011 Amsterdam
13 – 14 May 2011
Tsveta Schyns
"The patient experience in the development and implementation of National Plans for Rare Diseases in France"
Christel Nourissier
EURORDIS General Secretary
& Member of the EU Comittee of Experts on Rare Diseases
EUROPLAN advisor
Report Back from SGO 2024: What’s the Latest in Cervical Cancer?bkling
Are you curious about what’s new in cervical cancer research or unsure what the findings mean? Join Dr. Emily Ko, a gynecologic oncologist at Penn Medicine, to learn about the latest updates from the Society of Gynecologic Oncology (SGO) 2024 Annual Meeting on Women’s Cancer. Dr. Ko will discuss what the research presented at the conference means for you and answer your questions about the new developments.
Recomendações da OMS sobre cuidados maternos e neonatais para uma experiência pós-natal positiva.
Em consonância com os ODS – Objetivos do Desenvolvimento Sustentável e a Estratégia Global para a Saúde das Mulheres, Crianças e Adolescentes, e aplicando uma abordagem baseada nos direitos humanos, os esforços de cuidados pós-natais devem expandir-se para além da cobertura e da simples sobrevivência, de modo a incluir cuidados de qualidade.
Estas diretrizes visam melhorar a qualidade dos cuidados pós-natais essenciais e de rotina prestados às mulheres e aos recém-nascidos, com o objetivo final de melhorar a saúde e o bem-estar materno e neonatal.
Uma “experiência pós-natal positiva” é um resultado importante para todas as mulheres que dão à luz e para os seus recém-nascidos, estabelecendo as bases para a melhoria da saúde e do bem-estar a curto e longo prazo. Uma experiência pós-natal positiva é definida como aquela em que as mulheres, pessoas que gestam, os recém-nascidos, os casais, os pais, os cuidadores e as famílias recebem informação consistente, garantia e apoio de profissionais de saúde motivados; e onde um sistema de saúde flexível e com recursos reconheça as necessidades das mulheres e dos bebês e respeite o seu contexto cultural.
Estas diretrizes consolidadas apresentam algumas recomendações novas e já bem fundamentadas sobre cuidados pós-natais de rotina para mulheres e neonatos que recebem cuidados no pós-parto em unidades de saúde ou na comunidade, independentemente dos recursos disponíveis.
É fornecido um conjunto abrangente de recomendações para cuidados durante o período puerperal, com ênfase nos cuidados essenciais que todas as mulheres e recém-nascidos devem receber, e com a devida atenção à qualidade dos cuidados; isto é, a entrega e a experiência do cuidado recebido. Estas diretrizes atualizam e ampliam as recomendações da OMS de 2014 sobre cuidados pós-natais da mãe e do recém-nascido e complementam as atuais diretrizes da OMS sobre a gestão de complicações pós-natais.
O estabelecimento da amamentação e o manejo das principais intercorrências é contemplada.
Recomendamos muito.
Vamos discutir essas recomendações no nosso curso de pós-graduação em Aleitamento no Instituto Ciclos.
Esta publicação só está disponível em inglês até o momento.
Prof. Marcus Renato de Carvalho
www.agostodourado.com
NVBDCP.pptx Nation vector borne disease control programSapna Thakur
NVBDCP was launched in 2003-2004 . Vector-Borne Disease: Disease that results from an infection transmitted to humans and other animals by blood-feeding arthropods, such as mosquitoes, ticks, and fleas. Examples of vector-borne diseases include Dengue fever, West Nile Virus, Lyme disease, and malaria.
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ARTIFICIAL INTELLIGENCE IN HEALTHCARE.pdfAnujkumaranit
Artificial intelligence (AI) refers to the simulation of human intelligence processes by machines, especially computer systems. It encompasses tasks such as learning, reasoning, problem-solving, perception, and language understanding. AI technologies are revolutionizing various fields, from healthcare to finance, by enabling machines to perform tasks that typically require human intelligence.
Title: Sense of Smell
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the primary categories of smells and the concept of odor blindness.
Explain the structure and location of the olfactory membrane and mucosa, including the types and roles of cells involved in olfaction.
Describe the pathway and mechanisms of olfactory signal transmission from the olfactory receptors to the brain.
Illustrate the biochemical cascade triggered by odorant binding to olfactory receptors, including the role of G-proteins and second messengers in generating an action potential.
Identify different types of olfactory disorders such as anosmia, hyposmia, hyperosmia, and dysosmia, including their potential causes.
Key Topics:
Olfactory Genes:
3% of the human genome accounts for olfactory genes.
400 genes for odorant receptors.
Olfactory Membrane:
Located in the superior part of the nasal cavity.
Medially: Folds downward along the superior septum.
Laterally: Folds over the superior turbinate and upper surface of the middle turbinate.
Total surface area: 5-10 square centimeters.
Olfactory Mucosa:
Olfactory Cells: Bipolar nerve cells derived from the CNS (100 million), with 4-25 olfactory cilia per cell.
Sustentacular Cells: Produce mucus and maintain ionic and molecular environment.
Basal Cells: Replace worn-out olfactory cells with an average lifespan of 1-2 months.
Bowman’s Gland: Secretes mucus.
Stimulation of Olfactory Cells:
Odorant dissolves in mucus and attaches to receptors on olfactory cilia.
Involves a cascade effect through G-proteins and second messengers, leading to depolarization and action potential generation in the olfactory nerve.
Quality of a Good Odorant:
Small (3-20 Carbon atoms), volatile, water-soluble, and lipid-soluble.
Facilitated by odorant-binding proteins in mucus.
Membrane Potential and Action Potential:
Resting membrane potential: -55mV.
Action potential frequency in the olfactory nerve increases with odorant strength.
Adaptation Towards the Sense of Smell:
Rapid adaptation within the first second, with further slow adaptation.
Psychological adaptation greater than receptor adaptation, involving feedback inhibition from the central nervous system.
Primary Sensations of Smell:
Camphoraceous, Musky, Floral, Pepperminty, Ethereal, Pungent, Putrid.
Odor Detection Threshold:
Examples: Hydrogen sulfide (0.0005 ppm), Methyl-mercaptan (0.002 ppm).
Some toxic substances are odorless at lethal concentrations.
Characteristics of Smell:
Odor blindness for single substances due to lack of appropriate receptor protein.
Behavioral and emotional influences of smell.
Transmission of Olfactory Signals:
From olfactory cells to glomeruli in the olfactory bulb, involving lateral inhibition.
Primitive, less old, and new olfactory systems with different path
Title: Sense of Taste
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the structure and function of taste buds.
Describe the relationship between the taste threshold and taste index of common substances.
Explain the chemical basis and signal transduction of taste perception for each type of primary taste sensation.
Recognize different abnormalities of taste perception and their causes.
Key Topics:
Significance of Taste Sensation:
Differentiation between pleasant and harmful food
Influence on behavior
Selection of food based on metabolic needs
Receptors of Taste:
Taste buds on the tongue
Influence of sense of smell, texture of food, and pain stimulation (e.g., by pepper)
Primary and Secondary Taste Sensations:
Primary taste sensations: Sweet, Sour, Salty, Bitter, Umami
Chemical basis and signal transduction mechanisms for each taste
Taste Threshold and Index:
Taste threshold values for Sweet (sucrose), Salty (NaCl), Sour (HCl), and Bitter (Quinine)
Taste index relationship: Inversely proportional to taste threshold
Taste Blindness:
Inability to taste certain substances, particularly thiourea compounds
Example: Phenylthiocarbamide
Structure and Function of Taste Buds:
Composition: Epithelial cells, Sustentacular/Supporting cells, Taste cells, Basal cells
Features: Taste pores, Taste hairs/microvilli, and Taste nerve fibers
Location of Taste Buds:
Found in papillae of the tongue (Fungiform, Circumvallate, Foliate)
Also present on the palate, tonsillar pillars, epiglottis, and proximal esophagus
Mechanism of Taste Stimulation:
Interaction of taste substances with receptors on microvilli
Signal transduction pathways for Umami, Sweet, Bitter, Sour, and Salty tastes
Taste Sensitivity and Adaptation:
Decrease in sensitivity with age
Rapid adaptation of taste sensation
Role of Saliva in Taste:
Dissolution of tastants to reach receptors
Washing away the stimulus
Taste Preferences and Aversions:
Mechanisms behind taste preference and aversion
Influence of receptors and neural pathways
Impact of Sensory Nerve Damage:
Degeneration of taste buds if the sensory nerve fiber is cut
Abnormalities of Taste Detection:
Conditions: Ageusia, Hypogeusia, Dysgeusia (parageusia)
Causes: Nerve damage, neurological disorders, infections, poor oral hygiene, adverse drug effects, deficiencies, aging, tobacco use, altered neurotransmitter levels
Neurotransmitters and Taste Threshold:
Effects of serotonin (5-HT) and norepinephrine (NE) on taste sensitivity
Supertasters:
25% of the population with heightened sensitivity to taste, especially bitterness
Increased number of fungiform papillae
The prostate is an exocrine gland of the male mammalian reproductive system
It is a walnut-sized gland that forms part of the male reproductive system and is located in front of the rectum and just below the urinary bladder
Function is to store and secrete a clear, slightly alkaline fluid that constitutes 10-30% of the volume of the seminal fluid that along with the spermatozoa, constitutes semen
A healthy human prostate measures (4cm-vertical, by 3cm-horizontal, 2cm ant-post ).
It surrounds the urethra just below the urinary bladder. It has anterior, median, posterior and two lateral lobes
It’s work is regulated by androgens which are responsible for male sex characteristics
Generalised disease of the prostate due to hormonal derangement which leads to non malignant enlargement of the gland (increase in the number of epithelial cells and stromal tissue)to cause compression of the urethra leading to symptoms (LUTS
These lecture slides, by Dr Sidra Arshad, offer a quick overview of physiological basis of a normal electrocardiogram.
Learning objectives:
1. Define an electrocardiogram (ECG) and electrocardiography
2. Describe how dipoles generated by the heart produce the waveforms of the ECG
3. Describe the components of a normal electrocardiogram of a typical bipolar leads (limb II)
4. Differentiate between intervals and segments
5. Enlist some common indications for obtaining an ECG
Study Resources:
1. Chapter 11, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 9, Human Physiology - From Cells to Systems, Lauralee Sherwood, 9th edition
3. Chapter 29, Ganong’s Review of Medical Physiology, 26th edition
4. Electrocardiogram, StatPearls - https://www.ncbi.nlm.nih.gov/books/NBK549803/
5. ECG in Medical Practice by ABM Abdullah, 4th edition
6. ECG Basics, http://www.nataliescasebook.com/tag/e-c-g-basics
2. EURORDIS is a non-governmental patient-
driven alliance of patient organisations
representing 571 rare disease patient
organisations in 52 countries.
3. RareConnect project
RareConnect.org is an online social network for patients and
families.
Communities are built in partnership with patient groups who
help create, moderate, and maintain.
Each community is in 5 languages with human translation.
There are 54 rare diseases currently listed on RareConnect,
including porphyria.
4. MG community on RareConnect
Patient-centered community that
promotes global conversation and
connections between patients, families
and caregivers to improve the lives of
people living with rare diseases.
5. Project Aims
• facilitate patient and carer peer support
• empower patients and carers to trust
their experience
• promote progress in research through
patient generated knowledge
• build relationships by inviting
intervention from medical professionals
6. MG Community
• Launched June 2013 in 5 languages
– FR, EN, DE, IT, ES
• Seeded with stories, videos, articles…
• Human translation of all future stories
automatically
• On demand human translation and Google
Translator for forum posts
7. MG Community
• Many topics set for discussion, few responses.
• 145 registered members who have written 7
testimonials.
• 3 articles and 31 forum topics.
Let’s go over some statistics from the MG
community…
9. The MG community in numbers
5,608 total unique visitors (since June 19th)
10. Where do the members come from?
1. Unknown 38
2. Italy 27
3. United States 16
4. United Kingsom 9
5. Spain 9
6. Romania 8
7. France 9
8. Ireland 3
9. Martinique 2
10. Switzerland 2
11. Perú 2
12. Hungary 1
13. Netherlands 1
Total of Members: 145
11. Where do visitors come from?
1. Italy 1,112
2. United States 916
3. France 692
4. Germany 325
5. Spain 316
6. United Kingdom 316
7. Mexico 297
9. Romania 202
10. Canada 126
11. Belgium 118
12. Hungary 106
13. Peru 81
Total of countries: 89
Total of visitors: 5,608
12. How do visitors find the community?
–Google 3,046
–Direct traffic 812
–Facebook 806
–Mobile Facebook 375
–Eurordis.org 118
–Miastenie.ro 90
–Twitter 73
13. Which search terms are used?
– myasthenia gravis
– miastenia gravis
– myasthenia gravis association
– myasthénie forum
– myasthenie medicaments interdits
– miastenia
– alimentazione miastenia gravis
– liste medicaments interdit myasthenie
– miastenia gravis forum
– myasthenia gravis uk
- myasthenia gravis video
- myasthénie grave
- sport e miastenia
- www.mga-charity.org
- accociation de myasthénie grav
15. Why the MG community on
RareConnect?
• Patient data is not sold
• Patient groups govern the community and drive where
the project goes
• Human translation of stories and forum posts across 5
languages on key issues like accessing treatments
• Help us create an international space for supporting
patients and their families
16. Privacy on RareConnect
• You can decide if you want a public or private profile.
• Check a box and your message will only be viewable for
registered members.
• Use a nickname.
• The RareConnect team keeps an eye on all the community
members to ensure they belong there.
17. If a patient group wants to be involved
on the MG Community
• Join: http://www.rareconnect.org/en/register
• Encourage your members to join the international conversation
enabled by human translation
• Share the link to the Community on your website, social media,
newsletter
• Place badge on your website/blog or add RSS feed to your website
• Post updates on your group’s activities, share an update to your
family’s journey
18. How can we grow and engage
members?
What new content can be added?
19. Keeping communities active
• Organise a webinar with a specialist or researcher
• Ask a healthcare professional to write about their
work
• Create a short video interview
• Share photos from your recent event
• Share your story as a patient or a caregiver
20. Trimethylaminuria (TMAU) Webinars
• 5 webinars with prominent specialists
• Over 140 attendees
• Webinars are recorded
• Researchers answer patient questions after
the presentation
• Patients use webinar as gathering place to
share experience via chat
29. RareConnect vs. Facebook
Here are a few differences between RareConnect and Facebook:
- Facebook has advertising and sells your information to marketers.
- RareConnect does not have advertising and does not share information
with ANY 3rd parties.
- RareConnect has human translation across 5 languages.
- Facebook uses machine translation.
-Facebook may delete old posts in Groups, without warning or explanation,
old messages disappear.
- RareConnect keeps all messages and stories in the same place, with
permanent links.
- Facebook isn't that concerned with rare diseases.
- RareConnect staff at EURORDIS and NORD want to assist patient groups in
using RareConnect to build an international diseases movement.