Mark 16 May 2025 for hae day :-)

hae day :-) is our annual celebration of the HAE community and a key focus for awareness-raising efforts. Our activity challenge continues to record the steps you generate—solo or as part of a team—through your time spent on physical and wellbeing activities. As you prepare for hae day :-) 2025, our haeday.org website has lots of practical information to help you plan your media engagement, community involvement, or social media, as well as lots of inspiration for activities from our Member Organizations.

In 2024, the Mexican Association of Hereditary Angioedema (AMAEH) marked the first legally mandated National Hereditary Angioedema Day in Mexico with a program of events and activities that raised public awareness and provided a focus point for the HAE community. Global Perspectives brings you all the details to help inspire your activities for 2025.

hae day :-) 2024: AMAEH

The problem

In Mexico, with a population of more than 132 million people, it is estimated that there are 2,116 people with HAE. At the start of 2024, only 393 people were recorded as having HAE. This means that more than 80% of people with HAE in Mexico are undiagnosed or have died.

Sandra Nieto, the President of AMAEH, comments, “We give all our love and efforts to our family members, caregivers, friends, and those with HAE. We continue to fight because we will not allow one more death.”

In recent years, AMAEH has been highly successful in lobbying policymakers and elected lawmakers. Mexico became the first country to have a National Day of HAE legally declared at a legislative level. The organization wanted to acknowledge the first National Day and maximize its impact.

The objectives

• Address incorrect diagnosis and lack of access to appropriate HAE therapy, in the hope of preventing unnecessary deaths from the disease.
• Build greater empathy for people living with HAE and help others understand and recognize their strength.
• Recognize the patients, caregivers, family members, and all who support them.
• Raise awareness of HAE among the general population, including healthcare professionals.
• Share the journey for people with HAE, with the general public.
• Ultimately, place the patient at the center of attention. Advocate for people with HAE to receive the care they need from the healthcare system and society.

The activities

AMAEH Award 2024

For 2024, AMAEH gave three awards to members of the Mexican HAE community. The recipients were:

Luis Héctor Montañez Nieto
Luis Héctor saved his mother’s life for the first time 10 years ago. He guided paramedics as they gave life-saving medication to his mother following a severe HAE attack. Since then, he has been trained to administer intravenous and subcutaneous medications. He has also arranged training on HAE for children, adolescents, and adults, including how to give essential medicines for the disease.

Karla Sofía González González
Sofí first learned to administer medicines at the age of 5, giving insulin to her grandfather and grandmother. At the same age, she began to give her mother the medicine she needed to manage her HAE. Just 1 year later, at the age of 6, Sofí received training at the National Institute of Pediatrics so she could give intravenous medications, which ultimately saved her mother’s life on multiple occasions. Alongside all this, Sofí has HAE herself, which she calmly manages with self-administration of medicines.

Gabriela Sodi Miranda
Deputy Sodi is an elected politician in Mexico. She is President of a Commission on vulnerable groups in the Mexican Congress of the Union. Throughout her political life, he has championed the vulnerable and those facing discrimination. With this award, AMAEH acknowledges his efforts to bring about the National Hereditary Angioedema Day.

Paths of HAE: Walking through history

To coincide with the HAEi activity challenge to support hae day :-), AMAEH conducted a walk. This took place in the historic and archaeologically significant site of Cuicuilco. This site was chosen as it is a popular visitor attraction. AMAEH placed signs along the walking routes to raise awareness. The site also boasts a pyramid, which, due to its unusual features, provided an excellent metaphor for the exceptional nature of HAE.

In May, the entire AMAEH team, including patients, relatives, and caregivers, walked more than two million steps, which were uploaded to the hae day :-) activity challenge website.

Symposium

A one-day conference was planned and delivered on the National Day of HAE in Mexico. The conference focused on the individuals behind the disease and looked at some ways in which HAE had been seen in ancient and indigenous civilizations. There were many speakers on a diverse range of topics, including:

• Deputy Gabriela Sodi Miranda spoke (via video link) to explain the thinking behind the declaration of a National HAE Day.
• Dr. Alberto Contreras Verduzco explained the basics of HAE, including how the disease occurs, who it affects, and why, as well as common aspects such as triggers, prodromes, tests, and available medications.
• Dr. Sandra Nieto Martinez, President of AMAEH, presented data from the HAEi Baseline Burden of Illness survey conducted in Mexico. The survey examined why people with HAE do not go to the emergency services during an attack and the impact that HAE disease has on every aspect of their lives.
• Dr. Ma. Eugenia Vargas Camaño, a specialist in allergy and clinical immunology and an art historian, spoke about how HAE was referred to in history and, similar to today, was confused with other conditions.
• Amanda Silvana Patiño Cruz spoke about the potential benefits of an anti-inflammatory diet in patients with HAE. Ms Patiño recommended that patients observe any reactions they may have to foods and avoid those they consider to generate an adverse reaction.
• Maricruz García Bárcenas, a Master’s student of cultural diversity and Indigenous social spaces, asked: Are Indigenous communities in Mexico free of rare diseases? Ms García showed that life expectancy improved following advances in access to healthcare for indigenous people. However, the current model of care did not serve these individuals and communities well, preventing the timely detection of rare diseases in this population.
• Dr. Jesús Navarro Torres, Vice President of the Ibero-American Alliance for Rare Diseases and President of the International Organization of Low Prevalence Diseases, discussed the many challenges faced by people with rare diseases. He felt that there is strength in numbers; by speaking together, it will be possible to address medical ignorance of these conditions.

Sensorama

Following the conference, AMAEH developed a sensory experience for attendees. This allowed participants to put themselves in the shoes of people living with HAE, helping build empathy.

The results

The symposia welcomed 114 in-person attendees and 1,300 virtual attendees on Facebook Live, who were drawn from Mexico, Argentina, Brazil, Panama, Bolivia, and Peru.

Media activity to support awareness-raising led to 9 pieces of media coverage, including in Mexican news media such as La Jornada, TV channel a+, and the online medical publication hematology.mx. This coverage was the equivalent of many thousands of dollars in advertising.

To support the National Day of HAE, a wide range of video and visual content was produced and shared on Facebook and X.

Inspired by AMEAH?

AMAEH used a wide range of ideas to maximize their impact around hae day :-)

• The hard work of securing a legal declaration of a national day can be replicated through political advocacy.
• Awards offer an opportunity to recognize the people who work tirelessly to support the HAE community and improve the lives of people with HAE.
• Looking at the broadest possible impact and aspects of HAE can interest more people; using ancient societies and history gives a new perspective on HAE.
• A creative approach can deliver benefits, but this can take time and require financial investments, which may only be possible for some Member Organizations.

AMAEH’s acknowledgments and thank yous

AMAEH offers special recognition to those who dedicated their lives to this and who went ahead of us on the path: Dr. Marco Cicardi (Italy), Dr. José Egidio Fabiani (Argentina), and Dr. Silvestre Frenk Freund (Mexico). AMAEH thanks everyone and all the organizations that contributed their time, energy, and support to make these activities successful.