ii Rare Disease Day 2026

 

myAware - Urgent Rare Disease Day Appeal 2026

Cystinosis

Mersey Gateway Bridge

Rare Disease Day 2026 Official Video

28 February is 
Rare Disease Day

'Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.'

Manchester, UK https://www.rarediseaseday.org/event/light-up-for-rare-2/

Continued ... https://www.rarediseaseday.org/

Maguire et al. - 'A systematic scoping review of the noma evidence landscape: current knowledge and gaps'

Abstract

Background Noma (cancrum oris) is a severe gangrenous disease of the mouth and oro-facial structures. Noma often affects young children living in extreme poverty, malnutrition and poor sanitation. Gaps remain in understanding its aetiology, pathogenesis, prevention and treatment.

Methods and findings We systematically searched databases for all primary research studies (clinical trials, cohort studies, case–control, cross-sectional, other observational studies, case studies/series) reporting noma patients of any age up to 7 December 2022. The 366 publications (published between 1839 and 2022) included in our scoping review describe 15 082 patients. Although 53 cohort and 29 cross-sectional studies were identified, enrolling 13 489 patients, interventional research remains extremely limited, with only six studies identified (101 patients, range: 7–26) and only one in the past decade, highlighting a critical gap in treatment evaluation. A total of 380 different treatment modalities were described, which underscores lack of a standardised practice. Disease aetiology remains unclear, with 117 microorganisms reported across 113 studies, yet none more consistently linked to noma development. Since 2000, 91.2% of cases have been reported in Sub-Saharan Africa, though occurrences outside the ‘noma belt’ and into Asia and the Americas suggest a broader risk. The 212 potential risk factors identified in 269 (73.5%) publications reflect substantial heterogeneity, complicating efforts to determine definitive causative factors. Additionally, the inconsistent definition and reporting of noma staging significantly hinder comparability across studies, with wide adoption of the WHO staging classification needed.

Conclusion This comprehensive review of the literature underscores the urgent need for robust, policy-driven research to address the vast knowledge gaps in the physiopathology of noma and the limited evidence currently available to guide therapeutic and preventive policies. Collective action and increased research investment are crucial, especially now that noma is officially recognised as a neglected tropical disease by the WHO.

Brittany J Maguire, Rujan Shrestha, Prabin Dahal, Roland Ngu, Lionel Nizigama, Sumayyah Rashan, Poojan Shrestha, Elinor Harriss, Paul Newton, Yuka Makino, Benoit Varenne, Philippe J Guerin - Systematic scoping review of the noma evidence landscape: current knowledge and gaps: BMJ Global Health 2025;10:e018023 https://gh.bmj.com/content/10/7/e018023

Individual

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      INTERPERSONAL    :     SCIENCES               

HUMANISTIC  --------------------------------------  MECHANISTIC      

 SOCIOLOGY  :    POLITICAL 

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Group

PSYCHOLOGICAL IMPACT mental & emotional complications WITHDRAWAL LOST EDUCATION & LIFE CHANCES DEPRESSION PSYCHO-	malnutrition and poor sanitation PHYSICAL IMPACT LIMITED EVIDENCE - DISEASE KNOWLEDGE GAPS - AETIOLOGY  knowledge gaps in the physiopathology of noma
-SOCIAL MANAGEMENT SOCIAL IMPACT - LIFE CHANCES STIGMA SOCIAL EXCLUSION	extreme poverty, infrastructure NEED FOR POLICY-DRIVEN RESEARCH THERAPEUTIC - PREVENTIVE POLICIES RECOGNITION

Previously: 'neglected' : 'noma'

My source: https://x.com/benoit_varenne/status/1950955812915982487

RARE DISEASE DAY FEB 28 2025

Ava and Tammie

Individual

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      INTERPERSONAL    :     SCIENCES               

HUMANISTIC  --------------------------------------  MECHANISTIC      

 SOCIOLOGY  :    POLITICAL 

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Group

IMAGINATION IDENTITY EXPERIENCE EXPERTISE	ACTION RESEARCH - qualitative - quantitative ACCESSIBILITY
SUPPORT AWARENESS COMPANIONSHIP SOCIAL NETWORKS FAMILIES	FUNDING ACTIVISM COOPERATION COLLABORATION COORDINATION

Previously: 'Rare'

"Reforming oral health policy to contain noma"

"In a landmark decision in December 2023, the World Health Organisation designated noma as a neglected tropical disease, shedding light on a condition that often lurks in the shadows of poverty-stricken communities across sub-Saharan Africa, Latin America, and Asia. Noma is a severe rapidly progressing disease of the mouth and face mostly affecting children between the ages of two and six years suffering from malnutrition, infectious diseases, or living in extreme poverty with poor oral health or weakened immune systems like HIV and other diseases, which can lead to death due to complications such as sepsis. In 2012, the UN Human Rights Council acknowledged that neglecting noma is affected may amount to a violation of basic child rights."

Oluwaseyi Atoyebi. Reforming oral health policy to contain noma, 15th March 2024
https://punchng.com/reforming-oral-health-policy-to-contain-noma/ 

Individual
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      INTERPERSONAL    :     SCIENCES               

HUMANISTIC  --------------------------------------  MECHANISTIC      

 SOCIOLOGY  :    POLITICAL 

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Group

Psychological impacts
Social impacts - life chances	(neglected) neglected tropical disease

Previously:

From - https://hodges-model.blogspot.com/search?q=noma

Ioana Cismas (York) - What's in a Frame? A Human Rights Approach to Neglected Tropical Diseases - https://www.york.ac.uk/cahr/events/2022/justice-in-global-health-workshop/

Concept Note in Support of the Inclusion of Noma (Cancrum Oris) on the World Health Organization List of Neglected Tropical Diseases (Commissioned by the Government of Namibia, 2016), 6 pp. (with Marie-Solène Adamou Moussa-Pham).

Srour, M. L., & Baratti-Mayer, D. (2020). Why is noma a neglected-neglected tropical disease?. PLoS neglected tropical diseases, 14(8), e0008435. https://doi.org/10.1371/journal.pntd.0008435

Rare Diseases Day 2022 - and the FIVE domains

     Self - INDIVIDUAL - Person

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 INTERPERSONAL    :     SCIENCES               

HUMANISTIC -----------------------------------  MECHANISTIC    

SOCIOLOGY  :   POLITICAL 

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           Family - Community - GROUP - Organisations - Populations

"Learning from the rare disease community

Europe’s pharmaceutical entrepreneurs are taking the lessons learned from this community to develop health innovation which would not have been dreamt of a few decades ago."

 

Yes, they do! 

The sciences (all of them) are a vital domain, but as ever of course we must not let this limit the scope of our collective aspirations when it comes to rare diseases and innovation.

We need to take into account the four domains of Hodges' model plus the spiritual as we address local and global health with rare diseases and disability an intrinsic part of health systems and services whether in delivery or development.

In this way we also acknowledge the role of the social determinants of health and the SDGs.

RARE DISEASES DAY 2022

Image:
https://twitter.com/Parlimag/status/1497156923610836995?s=20&t=dvO5GlugrN185L3Z98k5PA

Previously:

'disease'

https://hodges-model.blogspot.com/search?q=disease

'rare'

https://hodges-model.blogspot.com/search?q=rare

'domain'

https://hodges-model.blogspot.com/search?q=domain

Global Rare Disease Day Event - World Expo Dubai/ONLINE

The NGO Committee for Rare Diseases, Ågrenska
Foundation, Rare Diseases International (RDI), and
EURORDIS-Rare Diseases Europe invite you to the
2022 Global Rare Disease Day Event
"Rare Diseases: A Global Priority for Equity."

 

  Self - INDIVIDUAL - Person

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 INTERPERSONAL    :     SCIENCES               

HUMANISTIC -----------------------------------  MECHANISTIC      

SOCIOLOGY  :   POLITICAL 

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Community - Group - Population

lived experience as: PLWRD carer	300 million persons living with a rare disease (PLWRD) worldwide
families social care social care provision (globally)? public awareness	"PLWRD require immediate and urgent attention, under the auspices of innovative global, regional, and national policies that address their needs, respect their human rights, and lead to more inclusive, sustainable societies in line with the UN Agenda 2030 and the Sustainable Development Goals." "... explore roadmaps for rare diseases in low-and middleincome countries around the world."

 

Rare Diseases Day 2021 28th February

We are asking #healthcare professionals who have worked with people with rare #dementia to complete a short survey to help us understand what we can do to help you support people with rare dementias: https://t.co/8Vfw0RmI6A. The deadline for responses is 5th March 2021. ☑️🗳️

— RareDementiaSupport (@RareDementia) February 23, 2021

And from:

https://www.rarediseaseday.org/

 

Yesterday..? Now..? Rare Diseases Day (really*) is Tomorrow

Just imagine - whether thinking about a nursing career, already a student nurse studying and learning how to practice, qualified or returning to nursing ... the range of real differences you - we can make!

*[see also - Yes: Rare Diseases Day was yesterday! oops!! ]
 

Yes: Rare Disease Day was yesterday...

... but Rare Diseases will still be affecting people tomorrow...

so, let's really make them 'yesterday'...

Rare Diseases Day 2017 28th February

RARE DISEASE DAY 28 FEB

Previous related posts ...

Rare Disease Day 28 February 2014

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

Source: http://www.rarediseaseday.org/

I am honored to stand, in her graceful place, and shine a light on a delicate group of individuals who, nevertheless, in sheer numbers are a force to be reckoned with. Thank you, Sean Hepburn Ferrer

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases touch children.

In the words of Audrey Hepburn, “We cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…”. It is in this spirit that we invite you, alongside Sean Hepburn Ferrer, to Join Together for Better Care.

group - population

Rare Disease Day 2012 - reflections using h2cm

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

Is it ironic that ‘I’, this ‘self’ becomes an expert of my condition by virtue of it being rare? Is it also rare because so few must live with the emotional consequences? Yes, personalised medicine holds great promise, but please don't forget - me: this person : I don't want to be left here.	Being that expert I may even know the ICD-10 … codes for my condition. I know the symptoms very well. I know the 'current' evidence and may also be able to tell you about the gaps in the knowledge base.  My family physician learns with me. Supported by policy and united as a group what might citizen science deliver?
Your carer may be the expert because for you this rare disease means you cannot readily self-advocate. We all need to know we are not alone. If there is a role for social media here it is: "Rare but Strong Together"	For those people with rare diseases we have to help them unify in order to shout, wave and raise awareness. After all: WE seek global health don't we? Being rare is there investment in funding for research? Must there be a market first to bring forth drugs / treatments? We know about individual motivation, whither the corporate drive - social responsibility.

My prompt and thanks!: Stu Young, Royal College of Nursing Students