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News

All news

12. 11. 2022
Rare Disease Day 2023

28.2.2023

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3. 11. 2022
Celebrate Giving Tuesday 2022 with HAE Junior

Giving Tuesday 2022

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2. 11. 2022
Many positive developments took place in the area of HAE during the last decade

Interview with Tomáš Freiberger Ph.D., Lead Physician of the Genetic Laboratory, CKTCH, Brno

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21. 10. 2022
International conference ‘Towards a New European Policy Framework: building the future together for rare diseases’

25 - 26.10.2022

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17. 10. 2022
HAE Patients in Ukraine Under War Conditions

What is it like to live with HAE in Ukraine during times of war?

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6. 10. 2022
HAE juniors raising  awareness among Czech & EU lawmakers

HAE juniors artwork raising awareness among Czech and European lawmakers.

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15. 9. 2022
International Plasma Awareness Week (IPAW)

3. – 7. October 2022

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14. 9. 2022
Workshop "Achieving a better quality of life for people with rare diseases"

Virtual workshop on 5.10.2022

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16. 8. 2022
HAE Junior art exhibition to be on display in the Czech Parliament

Duration: 3-21.10.2022

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12. 8. 2022
HAE Junior educational family camp 2022 was a great success!

Educational family camp 2022

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20. 6. 2022
"A message to the young with HAE? Do not give in to the disease!"

The first symptom occurred was when I was two years old – it was in 1977.

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20. 6. 2022
HAE Junior to participate in ECRD 2022 poster session

ECRD 2022 conference to take place online from 27 June to 1 July 2022.

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24. 5. 2022
Renewed call for artwork submissions

Submission deadline: 7.08.2022

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12. 5. 2022
HAE Junior – virtual patient meeting

When: 16th May from 17:30
Where: online

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5. 5. 2022
I finally broke free from the disease, which was burdening me

Finally I can live a normal, peaceful life.

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8. 3. 2022
ERN-RITA facilitates virtual medical consultations with European experts

Interview with Malena Vetterli, Board Member of ERN-RITA.

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7. 2. 2022
"Stronger than HAE" art exhibition aims to raise rare disease awareness

"Stronger than HAE" art exhibition as part of the Rare Disease Day 2022 campaign.

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19. 1. 2022
Stronger than HAE – our mission continues in 2022

HAE Junior in 2022

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31. 10. 2021
Stronger than HAE: Celebrate with HAE Junior Giving Tuesday 2021!

HAE Junior joins Giving Tuesday, which this year falls on November 30th, 2021.

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30. 10. 2021
"Living with HAE during the COVID-19 pandemic" patient survey results

Access to preventive treatment and education of patient families are the main patient priorities.

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13. 10. 2021
Czechia now has its own "orphan drugs" bill

The new legislation is valid as of January 2022.

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4. 10. 2021
International Plasma Awareness Week

When: 4 - 8. 10. 2021

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17. 9. 2021
Preparing for the new school year according to HAE Junior

Back to school can be a challenging time for some HAE juniors and their parents.

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24. 8. 2021
Memsource supports HAE Junior's international activities

HAE Junior welcomes Memsource as a new partner.

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6. 8. 2021
HAE Junior awarded the HAEro Games 2021 trophies!

HAE Junior held the second edition of HAEro Games in August 2021.

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30. 6. 2021
New partnership with Počítače dětem to support HAE juniors

Education of HAE children is one of our priorities.

Read more
24. 6. 2021
First-aid thermosets

HAE Junior distributes first-aid thermosets.

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16. 5. 2021
"We have big dreams for HAE juniors" exhibition

HAE Junior drawing exhibition.

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24. 4. 2021
The Best Gift: Freedom

Regaining freedom.

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24. 3. 2021
Informational leaflets for practical situations

Informational leaflets for HAE patients & their families.

Read more
6. 3. 2021
"We often experience personal lockdown, irrespective of governmental decisions."

HAE Junior’s joins the Rare Diseases Day 2021 awareness campaign.

Read more
14. 1. 2021
Psychological support for HAE patient families

Living with HAE can be burdensome both for the patients and their families.

Read more
10. 1. 2021
Life with HAE through a mother's eyes

Supporting the development of my children's talents has returned the joy of life to our whole family - in spite of HAE diagnosis and other obstacles in life.

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22. 10. 2020
Chronic absentee with poor grades

Patient story illustrating the burden of HAE in relation to education.

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10. 7. 2020
My painful adolescence with HAE

A patient testimonial about the experience of living with HAE as a teenager.

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4. 5. 2020
The very first HAE symptom brought me to the operating table. Unnecessarily.

A patient story describing how the very first HAE symptom can lead to unnecessary surgery.

Read more
14. 3. 2020
Face to Face Against HAE

Growing up with HAE as experienced by one of the HAE juniors.

Read more

Stories and interviews

2. 11. 2022
Many positive developments took place in the area of HAE during the last decade

Interview with Tomáš Freiberger Ph.D., Lead Physician of the Genetic Laboratory, CKTCH, Brno

Read more
17. 10. 2022
HAE Patients in Ukraine Under War Conditions

What is it like to live with HAE in Ukraine during times of war?

Read more
20. 6. 2022
"A message to the young with HAE? Do not give in to the disease!"

The first symptom occurred was when I was two years old – it was in 1977.

Read more
5. 5. 2022
I finally broke free from the disease, which was burdening me

Finally I can live a normal, peaceful life.

Read more
8. 3. 2022
ERN-RITA facilitates virtual medical consultations with European experts

Interview with Malena Vetterli, Board Member of ERN-RITA.

Read more
24. 4. 2021
The Best Gift: Freedom

Regaining freedom.

Read more
10. 1. 2021
Life with HAE through a mother's eyes

Supporting the development of my children's talents has returned the joy of life to our whole family - in spite of HAE diagnosis and other obstacles in life.

Read more
22. 10. 2020
Chronic absentee with poor grades

Patient story illustrating the burden of HAE in relation to education.

Read more
10. 7. 2020
My painful adolescence with HAE

A patient testimonial about the experience of living with HAE as a teenager.

Read more
4. 5. 2020
The very first HAE symptom brought me to the operating table. Unnecessarily.

A patient story describing how the very first HAE symptom can lead to unnecessary surgery.

Read more
14. 3. 2020
Face to Face Against HAE

Growing up with HAE as experienced by one of the HAE juniors.

Read more

News

3. 11. 2022
Celebrate Giving Tuesday 2022 with HAE Junior

Giving Tuesday 2022

Read more
6. 10. 2022
HAE juniors raising  awareness among Czech & EU lawmakers

HAE juniors artwork raising awareness among Czech and European lawmakers.

Read more
14. 9. 2022
Workshop "Achieving a better quality of life for people with rare diseases"

Virtual workshop on 5.10.2022

Read more
12. 8. 2022
HAE Junior educational family camp 2022 was a great success!

Educational family camp 2022

Read more
20. 6. 2022
HAE Junior to participate in ECRD 2022 poster session

ECRD 2022 conference to take place online from 27 June to 1 July 2022.

Read more
7. 2. 2022
"Stronger than HAE" art exhibition aims to raise rare disease awareness

"Stronger than HAE" art exhibition as part of the Rare Disease Day 2022 campaign.

Read more
19. 1. 2022
Stronger than HAE – our mission continues in 2022

HAE Junior in 2022

Read more
31. 10. 2021
Stronger than HAE: Celebrate with HAE Junior Giving Tuesday 2021!

HAE Junior joins Giving Tuesday, which this year falls on November 30th, 2021.

Read more
30. 10. 2021
"Living with HAE during the COVID-19 pandemic" patient survey results

Access to preventive treatment and education of patient families are the main patient priorities.

Read more
13. 10. 2021
Czechia now has its own "orphan drugs" bill

The new legislation is valid as of January 2022.

Read more
17. 9. 2021
Preparing for the new school year according to HAE Junior

Back to school can be a challenging time for some HAE juniors and their parents.

Read more
24. 8. 2021
Memsource supports HAE Junior's international activities

HAE Junior welcomes Memsource as a new partner.

Read more
6. 8. 2021
HAE Junior awarded the HAEro Games 2021 trophies!

HAE Junior held the second edition of HAEro Games in August 2021.

Read more
30. 6. 2021
New partnership with Počítače dětem to support HAE juniors

Education of HAE children is one of our priorities.

Read more
24. 6. 2021
First-aid thermosets

HAE Junior distributes first-aid thermosets.

Read more
16. 5. 2021
"We have big dreams for HAE juniors" exhibition

HAE Junior drawing exhibition.

Read more
24. 3. 2021
Informational leaflets for practical situations

Informational leaflets for HAE patients & their families.

Read more
6. 3. 2021
"We often experience personal lockdown, irrespective of governmental decisions."

HAE Junior’s joins the Rare Diseases Day 2021 awareness campaign.

Read more
14. 1. 2021
Psychological support for HAE patient families

Living with HAE can be burdensome both for the patients and their families.

Read more

Contact:

HAE Junior non-profit organisation
Wichterlova 2372/8, 
Prague 8, 182 00
Organisation ID 08749787

info@haejunior.cz
704 007 717

Contact for journalists:
media@haejunior.cz

Media kit download
 

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