News

All news
Events
Stories and interviews
News

All news

6. 2. 2024
Rare Disease Day 2024 highlights precious moments of patients with rare diseases

Precious moments as the main focus of this year's campaign

Read more
22. 1. 2024
Everything you need to know about HAE in one practical online guidebook

The newly translated guidebook helps the patients to get familiar with HAE.

Read more
4. 1. 2024
Let’s raise HAE awareness while sporting!

Did you know you can support charity projects while practicing your favorite sport?

Read more
6. 12. 2023
HAE Junior patient organization celebrates its 4th anniversary

Interview with Camelia Isaic on the occasion of the fourth anniversary of the organization

Read more
5. 12. 2023
Rare Disease Day 2024

Date: 29th February 2024

Read more
18. 11. 2023
Family educational camp with HAE Junior 2024

When: 12th – 14th April 2024

Read more
7. 11. 2023
HAE Junior presents 2024 awareness calendar!

Calendar with drawings made by Czech HAE children

Read more
1. 11. 2023
Celebrate Giving Tuesday 2023 with HAE Junior

Giving Tuesday falls on Tuesday, November 28, 2023

Read more
18. 10. 2023
Autumn Virtual Patient Meeting

When: 21.11.2023 @ 17:30
Where: online

Read more
11. 10. 2023
HAEi LEAP 2024 is opening registrations 

Registrations are open until Sunday 12th November 2023

Read more
11. 10. 2023
2023 NAPO Conference: 'Medicines Policy and its Impact on Quality of Life'

31 October 2023

Read more
18. 9. 2023
Do you suffer from recurrent swelling? These 10 questions can save your life.

An ACARE questionnaire to help patients who suffer from swellings (angioedema) in their diagnosis quest

Read more
18. 9. 2023
About 40% of blood plasma used to make plasma-derived medicines for European patients is given by US donors

Interview about the importance and future of plasma derived medicines in the EU

Read more
18. 9. 2023
International Plasma Awareness Week (IPAW)

2. – 6. October 2023

Read more
25. 8. 2023
Educational materials and recommendations for the new school year

Best wishes to all HAE juniors in the new school year!

Read more
2. 8. 2023
HAEi Regional Conference EMEA

Dates: 1–3 September 2023

Read more
31. 7. 2023
HAE juniors' families joined the fourth educational summer camp

Educational summer camp 2023

Read more
19. 6. 2023
HAE and holidays – exploring the world despite the disease

HAE & holidays: how to best prepare

Read more
7. 6. 2023
HAE Junior Summer Camp 2023

When: 23-26.07.2023

Read more
6. 6. 2023
What to do if you are not diagnosed yet, but have symptoms that could possibly be due to HAE?

Interview with doc. Pavlína Králíčková, Ph.D. from University Hospital Hradec Králové.

Read more
11. 5. 2023
New poster aims to improve the quality of emergency care for Czech HAE patients

Raising disease awareness on HAE Day 2023

Read more
19. 4. 2023
Virtual meeting on HAE Day

When: 16.5.2023
Where: online

Read more
3. 4. 2023
#active4HAE challenge

1 April 2023 – 31 May 2023

Read more
28. 3. 2023
The future of HAE patients is bright

Interview with Michal Rutkowski, HAEi Regional Patient Advocate

Read more
28. 2. 2023
Together we are strong on Rare Disease Day 2023!

Rare Disease Day 2023

Read more
27. 2. 2023
Patients’ voice is heard also thanks to HAE Junior

Intreview with Ms. Kateřina Slabá, head of the Promotion of Patients´ Rights Unit of the Ministry of Health

Read more
9. 12. 2022
Patient organizations are the "voice of patients"

Interview with Tímea Piskáčková, NAPO Executive Director.

Read more
6. 12. 2022
HAE Junior joins HAEi family

HAE Junior joins HAEi family

Read more
1. 12. 2022
HAE Junior – virtual patient meeting

Thu, 5th January 2023, 17:30 - 18:30

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

25 - 26.10.2022

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

Duration: 3-21.10.2022

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

Educational family camp 2022

Read more
20. 6. 2022
"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
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
24. 5. 2022
Call for artwork submissions

Submission deadline: 7.08.2022

Read more
12. 5. 2022
HAE Junior – virtual patient meeting

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

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
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
4. 10. 2021
International Plasma Awareness Week

When: 4 - 8. 10. 2021

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. 4. 2021
The Best Gift: Freedom

Regaining freedom.

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
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

Events

5. 12. 2023
Rare Disease Day 2024

Date: 29th February 2024

Read more
18. 11. 2023
Family educational camp with HAE Junior 2024

When: 12th – 14th April 2024

Read more
18. 10. 2023
Autumn Virtual Patient Meeting

When: 21.11.2023 @ 17:30
Where: online

Read more
11. 10. 2023
2023 NAPO Conference: 'Medicines Policy and its Impact on Quality of Life'

31 October 2023

Read more
18. 9. 2023
International Plasma Awareness Week (IPAW)

2. – 6. October 2023

Read more
2. 8. 2023
HAEi Regional Conference EMEA

Dates: 1–3 September 2023

Read more
7. 6. 2023
HAE Junior Summer Camp 2023

When: 23-26.07.2023

Read more
19. 4. 2023
Virtual meeting on HAE Day

When: 16.5.2023
Where: online

Read more
3. 4. 2023
#active4HAE challenge

1 April 2023 – 31 May 2023

Read more
1. 12. 2022
HAE Junior – virtual patient meeting

Thu, 5th January 2023, 17:30 - 18:30

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

25 - 26.10.2022

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

Duration: 3-21.10.2022

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

Educational family camp 2022

Read more
24. 5. 2022
Call for artwork submissions

Submission deadline: 7.08.2022

Read more
12. 5. 2022
HAE Junior – virtual patient meeting

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

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
4. 10. 2021
International Plasma Awareness Week

When: 4 - 8. 10. 2021

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

HAE Junior drawing exhibition.

Read more

Stories and interviews

6. 12. 2023
HAE Junior patient organization celebrates its 4th anniversary

Interview with Camelia Isaic on the occasion of the fourth anniversary of the organization

Read more
18. 9. 2023
About 40% of blood plasma used to make plasma-derived medicines for European patients is given by US donors

Interview about the importance and future of plasma derived medicines in the EU

Read more
6. 6. 2023
What to do if you are not diagnosed yet, but have symptoms that could possibly be due to HAE?

Interview with doc. Pavlína Králíčková, Ph.D. from University Hospital Hradec Králové.

Read more
28. 3. 2023
The future of HAE patients is bright

Interview with Michal Rutkowski, HAEi Regional Patient Advocate

Read more
27. 2. 2023
Patients’ voice is heard also thanks to HAE Junior

Intreview with Ms. Kateřina Slabá, head of the Promotion of Patients´ Rights Unit of the Ministry of Health

Read more
9. 12. 2022
Patient organizations are the "voice of patients"

Interview with Tímea Piskáčková, NAPO Executive Director.

Read more
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

6. 2. 2024
Rare Disease Day 2024 highlights precious moments of patients with rare diseases

Precious moments as the main focus of this year's campaign

Read more
22. 1. 2024
Everything you need to know about HAE in one practical online guidebook

The newly translated guidebook helps the patients to get familiar with HAE.

Read more
4. 1. 2024
Let’s raise HAE awareness while sporting!

Did you know you can support charity projects while practicing your favorite sport?

Read more
7. 11. 2023
HAE Junior presents 2024 awareness calendar!

Calendar with drawings made by Czech HAE children

Read more
1. 11. 2023
Celebrate Giving Tuesday 2023 with HAE Junior

Giving Tuesday falls on Tuesday, November 28, 2023

Read more
11. 10. 2023
HAEi LEAP 2024 is opening registrations 

Registrations are open until Sunday 12th November 2023

Read more
18. 9. 2023
Do you suffer from recurrent swelling? These 10 questions can save your life.

An ACARE questionnaire to help patients who suffer from swellings (angioedema) in their diagnosis quest

Read more
25. 8. 2023
Educational materials and recommendations for the new school year

Best wishes to all HAE juniors in the new school year!

Read more
31. 7. 2023
HAE juniors' families joined the fourth educational summer camp

Educational summer camp 2023

Read more
19. 6. 2023
HAE and holidays – exploring the world despite the disease

HAE & holidays: how to best prepare

Read more
11. 5. 2023
New poster aims to improve the quality of emergency care for Czech HAE patients

Raising disease awareness on HAE Day 2023

Read more
28. 2. 2023
Together we are strong on Rare Disease Day 2023!

Rare Disease Day 2023

Read more
6. 12. 2022
HAE Junior joins HAEi family

HAE Junior joins HAEi family

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 (at) haejunior.cz

Contact for journalists:
media@haejunior.cz

Media kit download
 

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