Rare Disease Day 2021 – Review Activities WAPO Members

The 300 million people living with a rare disease around the world and their families face common challenges in their daily lives. As a vulnerable and neglected population they are disproportionally affected by stigma, discrimination and social marginalization, within their social environment as well as society at large.

There are over 6000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening. Due to the rarity of each individual disease and scattered populations, expertise and information is scarce. In health and support systems designed for common diseases people living with a rare disease face inequities in accessing diagnosis, care and treatments.

Some aspects of Pituitary Disease are rare, for example ACTH-dependent Cushing’s disease affects 2 persons per million in the population annually.  Acromegaly annual incidence is 1/91,000 to 1/526,000.  Congenital Hypopituitarism 1 in 4000 births. (Ref: Orphanet)

In Acromegaly and Cushing’s Disease the onset is insidious with a slow progression, acromegaly is often diagnosed from four to more than ten years after its onset. WAPO, and its members, are dedicated to creating more awareness with a view to earlier diagnosis, thus a better quality of life.

Therefore, we’d like to look back with you on an important day to raise awareness, and show the activities WAPO members organized in their country!

The WAPO Board of Directors,
Sheila, Sue, Sandra, JD, Andrei, Muriël

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Actividades FAETH por el Día Mundial de las Enfermedades Raras 2021 – Febrero 27

FAETH, junto a otras organizaciones de enfermedades Raras y  de Catastróficas forma Organizaciones Unidas Raras y Catastróficas.  Por el Día Mundial de las Enfermedades Raras se realizó  un evento científico – Cultural

FAETH, together with other organizations for Rare and Catastrophic diseases, forms United Rare and Catastrophic Organizations.  For World Rare Diseases Day, a scientific – Cultural event was held

PRIMER ENCUENTRO DE PACIENTES CON  ENFERMEDADES RARAS ECUADORUNIDOS PARA CONOCER LAS ENFERMEDADES RARAS

FIRST MEETING OF PATIENTS WITH RARE DISEASES ECUADOR
UNITED TO KNOW THE RARE DISEASES

27. de Febrero | February 27th

Entre los expertos que participaron en el evento se encuentran | Among the experts who participated in the event are:

– Dr. Guillermo Romero – Neutofisiologo – Miastenia Gravis | Neutophysiologist – Myasthenia Gravis;
– Dr. William Acosta – Endocrinólogo –  ‘¿Que es la Hipófisis? y ¿Cuándo se enferma?’ |
Endocrinologist – ‘What is the Pituitary? And when do you get sick?’;
– Dr. Mario Moreno – Reumatólogo – “Enfermedades Reumáticas” – Esclerodermia |
“Rheumatic Diseases and Scleroderma’;
– Dr. Geovanny Mera – Cardiólogo – ‘Hipertensión Pulmonar’ |
Cardiologist – ‘Pulmonary Hypertension’;
– Dra. Mariela Martínez – Neumóloga – ‘Fibrosis Quística’ | Pulmonologist – ‘Cystic Fibrosis’
– ‘Terapia de Bienestar y alegría’ con: Raquel Rodríguez, Clown – Directora de Fundación Narices         Rojas |
‘Well-being and joy therapy’ with: Raquel Rodríguez, Clown – Director of Fundación Narices Rojas
– Actuación artística musical: Violeta Veloz y Williams Veliz |
Musical artistic performance: Violeta Veloz and Williams Veliz
– Conductora: Psicóloga y Actriz: Maricela Gómez | Host: Psychologist and Actress: Maricela Gómez

28. de Febrero | February 28th 

Se gestionó con las autoridades municipales para que se  iluminen  los edificios y monumentos más importantes de la ciudad de Guayaquil, para conmemorar el Día de las Enfermedades Raras y recordar la importancia del diagnóstico y tratamiento oportuno para los miles de afectados al rededor del mundo

It was managed with the municipal authorities so that the most important buildings and monuments of the city of Guayaquil are illuminated, to commemorate Rare Diseases Day and remember the importance of timely diagnosis and treatment for the thousands of affected people around the world.

                

Margarita Vásquez Amoroso
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CDMX ACROMEGALY organized a combined Acromegaly Campaign in Mexico

https://www.facebook.com/1649349529/videos/pcb.726599244676945/10222432164266791

https://www.facebook.com/1649349529/videos/pcb.726599244676945/10222432164546798

David Gómez Hernandez _________________________________________________________________

PNA distributed a very ‘flashy’ poster to celebratethe day … See it’s effects here.

 

Jackie Hubbard

 

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The Lithuanian Pituitary Patients’ Association AUSVIS

The Lithuanian Pituitary Patients’ Association AUSVIS mentioned the International Rare Diseases Day by inviting people of Lithuania for the solo walk event. Community members and supporters of Association AUSVIS were invited to support the pituitary patients in the last week of February (February 22-28, 2021). Participants of the event were invited to upload photos from the hike to Facebook, indicate the distance travelled and mark the post hashtag #RetuLiguDiena2021 and  #ZingsniaisPalaikauLhpa.

Taking into account that due to Covid-19 situation mass events are not allowed in Lithuania, the Association urged to avoid mass gatherings and invited people to do the walk individually.

Association AUSVIS invited patients with rare diseases and to join the hike. Walking is a great way to stay healthy, and walking with a noble goal is a lot more fun!

Milena Puchova

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Here is some information about our event for Rare Disease day.
The key messages of the 2021 campaign were:

Rare is many  |  Rare is strong  |  Rare is proud

We asked our community to get involved by sharing a photo with painted hands on social media using #RareDiseaseDay and tag @rarediseaseday.

We also invited people, either in written or video form, to raise awareness about rare diseases and their impact on peoples’ lives by sharing their story of living with a rare disease or caring for someone that does.

Finally, we invited people to organise an event – at work, with friends or family, during or around the month of February to raise awareness, and attend a virtual Parliamentary event hosted by Rare Disease UK on 24th February, asking them to share pictures and videos using #RareDiseaseDay.
We also linked it to our first Virtual Pituitary Foundation Conference, which ran from 1 – 6 March.
Here is more information about this, and the Conference Programme.

 

 

Our spring campaign highlights ‘We are Pituitary’, again promoting the message that everyone involved in the pituitary community- patients, carers, family members, volunteers, staff, doctors, surgeons, surgeons, pharmacists etc- are stronger together. We offered everyone a chance to give thanks to someone or something, or be thankful for something they have experienced on the pituitary journey, and produced a message board for everyone to post their comments on a dedicated site.

If you would like to view any of the events occurring this week, please see here: https://www.pituitary.org.uk/virtual-conference/watch/

Sammy Harbut

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On Wednesday 2/24, Lifetime Channel’s The Balancing Act featured a special segment of their ongoing Behind the Mystery series focused on Rare Disease Day. “What Make s Us Tick” aired at 7:30am EST and usually repeats, then will be available on  YouTube a short while later

Shameless plug – several years ago we were able to do some Cushing’s awarenesswork on this same show! Click here for that segment: https://www.youtube.com/watch?v=58aL9TgK6jk&t=42s

 

 

 

Leslie Edwin
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Rare diseases can impact mental health in multiple ways. With #acromegaly and #gigantism, causes can include:

Symptoms being dismissed.
Wondering why you look so different in photos.
Wondering why you keep gaining weight.
Not being able to do regular activities.
Ongoing pain.
Cognitive and emotional impacts of hormonal changes: lack of focus, quick to anger,
worsening short-term memory, forgetting words.

Don’t hesitate to reach out for help and support. You’re not alone! #RareDiseaseDay #Acrorage #Acrofog #MentalHealth          www.acromegalycanada.ca

 Early diagnosis can make a big difference to quality of life. If you have these or other symptoms listed here acromegalycanada.ca/resources/about-acromegaly/, ask your doctor about an IGF-1 test. And be your own advocate if you’re not taken seriously! #RareDiseaseDay #Acromegaly

Deanna Badiuk

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