Rare Disease Awareness Editathon on Wikipedia/February 2021

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The zebra ribbon is used for rare disease awareness, as zebras each have their own unique striped pattern and no two are like, much similar to rare disease patients. It also serves as a reminder to doctors that the uncommon exists: the saying "when you hear hoof beats you should think horses, not zebras" does not apply for rare diseases.


What is a rare disease?[edit]

Over 300 million people in the world live with a rare disease, usually throughout the entirety of their life as they are primarily genetic in origin. There are numerous definitions for rare diseases that vary from region to region and country to country, but generally a disease is classified as rare when it affects 1 in 1,000 to 1 in 200,000 individuals in a community. Rare diseases affect the lives of patients and their loved ones or caregivers. Treatment is often extremely difficult for two main reasons: 1) therapy protocols involve costly research 2) the production of medicines is not a profitable field for the pharmaceutical industry, to the extent that often the medications used to treat rare diseases are referred to as orphan drugs. Thus it makes sense that rare disease patients need reliable information they can obtain on the Internet.

How can Wikipedia help?[edit]

By making reliable information about rare diseases widely available in as many languages as possible. There is a tremendous lack of articles related to rare diseases on most of the language versions of Wikipedia. On the occasion of Rare Disease Day, designated on a "rare" day - for leap years it is February 29, other years it's February 28 – we're launching the Wikipedia Rare Disease Awareness Editathon for February 2021, hoping that it will be established as an initiative for years to come.

The initiative[edit]

Editors from multiple language communities are joining efforts to spread the idea to a growing list of Wikipedias. We have drafted a list of articles that are missing in Greek and Arabic, and we welcome other language communities to join. Add your username/community if you want to join and/or represent your community and add a column to the tables below for your language (if you need assistance, don’t hesitate to reach out to us!)

The articles[edit]

  • We have separated the articles into three main categories: genetic, skeletal and infectious.
  • The lists below represent articles that are missing from both Greek and Arabic, however feel free to add articles missing from your language to the list. The links to the categories will help you identify what else is missing in your language.
  • An editor who creates an article can add the link to the table. We will be checking and updating regularly as new content is created.

Rare genetic syndromes[edit]

Category: Rare genetic syndromes

Articles
English Greek Arabic
3C syndrome
3q29 microdeletion syndrome Σύνδρομο μικροδιαγραφής 3q29
8p23.1 duplication syndrome Σύνδρομο διπλασιασμού 8p23.1
Ablepharon macrostomia syndrome Σύνδρομο αβλεφαρίας - μακροστομίας
Bainbridge-Ropers Syndrome Σύνδρομο Μπάλερ-Τζέρολντ
Baller–Gerold syndrome
Barber–Say syndrome Σύνδρομο Μπάρμπερ-Σέι
Bare lymphocyte syndrome type II
Cartilage–hair hypoplasia Υποπλασία χόνδρων-τριχών
COACH syndrome
Kahrizi syndrome Σύνδρομο Καχρίζι
Neotenic complex syndrome
Xp11.2 duplication

Rare infectious diseases[edit]

Category: Rare infectious diseases

Articles
English Greek Arabic
Dioctophyme renale
Garre's sclerosing osteomyelitis Σκληρυντική οστεομυελίτιδα του Γκαρέ
Gongylonema pulchrum
Granulomatous amoebic encephalitis
Halicephalobus gingivalis
Human monocytotropic ehrlichiosis
Parechovirus B
Postvaccinal encephalitis Μετεμβολιακή εγκεφαλίτιδα
Progressive rubella panencephalitis
Progressive vaccinia
Sealpox
Trichodysplasia spinulosa

Rare skeletal diseases[edit]

Rare skeletal - or bone - diseases do not have their own category as of yet; we have used the general rare diseases category and the skeletal disorders category to draw up the list.

Articles
English Greek Arabic
Conradi–Hünermann syndrome
Gerodermia osteodysplastica
Handigodu syndrome
Kniest dysplasia
Malignant infantile osteopetrosis
Metachondromatosis Μεταχονδρωμάτωση
Osteochondrodysplasia
Schwartz–Jampel syndrome Σύνδρομο Σβαρτς-Γιάμπελ
Spondyloperipheral dysplasia
Synovial chondromatosis
Fibrous dysplasia of bone Ινώδης δυσπλασία των οστών

General[edit]

Here is a list of general articles with useful information related to rare diseases:

Articles
English Greek Arabic
Center of expertise for rare diseases Κέντρο εμπειρογνωμοσύνης σπανίων παθήσεων
European Organisation for Rare Diseases Ευρωπαϊκός Οργανισμός για τις Σπάνιες Ασθένειες
List of rare disease organisations
Rare Disease Day Ημέρα Σπάνιων Παθήσεων
Rare Diseases Clinical Research Network

What else can I do?[edit]

Ideally, we would like to see the articles in the above lists on Wikipedia in multiple languages… but there are simpler things that you can do! Some ideas:

  • Improve the quality of existing rare disease articles
  • Translate labels and descriptions of rare diseases on Wikidata to your native language
  • Upload photos related to rare diseases on Commons

Use the discussion page to post us a note about what you have accomplished, or suggest a new idea :)

Coordinators[edit]

Arabic: Mossab Banat

English: Netha Hussain

Greek: Mina Theofilatou

Participants[edit]

If you are interested in this awareness campaign, feel free to add your name here:

  1. Saintfevrier
  2. NikosLikomitros

External Links[edit]

Read about the latest in rare disease advocacy by the international alliance of rare disease organizations “Rare Diseases International”

See the factsheet put together by EURORDIS for Rare Disease Day

Publicity[edit]

The Rare Disease Awareness Editathon on the official Rare Disease Day page