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Young advocate Jane Velkovski on accessibility and making a difference through football
In this episode of Rare on Air, host Julien Poulain speaks with Jane Velkovski, a passionate young advocate for people with spinal muscular atrophy (SMA) and other disabilities.
Jane shares his journey from a young child facing accessibility challenges to becoming a powerful voice for change on an international stage. He discusses his early memories, the role of football in his life, and his vision for a more inclusive society.
Jane also highlights the importance of newborn screening for rare diseases like SMA, and shares personal stories of advocacy successes, emphasising the need for acceptance and equality.
Contact the podcast by emailing RareOnAir@eurordis.org, and join the conversation on social media using the hashtag #EurordisRareOnAir.
Переглядів: 19

Відео

Patient Partnership Webinar - Unlocking ERN Potential: Disease Specific Measures
Переглядів 1121 годину тому
The increasing recognition and diagnosis of rare diseases over the past decade have led to a growing body of knowledge within specialised clinical teams and centers. This expansion is evident in the European Reference Networks (ERN), which connect over 1,600 clinical teams from more than 300 specialised hospitals in the EU/EEA region. The challenge now is to transform this collective expertise ...
Healthcare Webinar: Added Value of Patient Involvement in the Design of Care Pathways
Переглядів 3214 днів тому
The European Reference Networks (ERNs) are collaborating with national authorities under the new EU Joint Action for Integration (JARDIN) to develop ERN care pathways based on clinical guidelines, that can be tailored and adopted locally in national healthcare systems. But what is the role of patients and their representatives in the design and development of rare disease care pathways? This we...
Patient Partnership Webinar: The Patient Experience - partnering to improve hospital services
Переглядів 36Місяць тому
The webinar illustrates how patient partnership can be organised to improve healthcare services in hospitals that host ERNs’ Expert Centres. Joan Vinyets i Rejón, Head of the Patient Experience Area and Jordi Antón, Head of the Paediatric Rheumatology Deparment, at Sant Joan de Déu Barcelona Children's Hospital (Spain) present their Patient Experience programme and showcase how collaboration wi...
Marina Zapparoli Manzoni on the power of finding and building a community
Переглядів 32Місяць тому
In this episode of Rare on Air, host Julien Poulain interviews Marina Zapparoli-Manzoni, President of Euro-HSP (www.eurohsp.eu/) and Treasurer of AIVI.PS (www.aivips.it/) , organisations dedicated to supporting those affected by Hereditary Spastic Paraplegia (HSP). Marina shares her family's journey with HSP, discussing the emotional challenges they faced in securing a diagnosis for her son, Ed...
Healthcare Webinar - Approaches to Evaluate Evidence on Rare Disease Guidelines
Переглядів 30Місяць тому
EURORDIS Healthcare Webinar on Approaches to Evaluate Evidence on Rare Disease Guidelines It is well acknowledged that a different approach is needed to evaluate new Orphan Medicines compared to standard medicines and vaccines, due to the small population numbers that are impacted by rare diseases. With limited published evidence available, how can we adopt an enhanced approach to reviewing all...
Young Advocates
Переглядів 19Місяць тому
In this month’s episode of 10 Minutes With, Host Rhiannon W. talks to Adéla Odrihocká, an award winning rare disease and disability & inclusion advocate, about the highs and lows of her journey in the rare disease space so far.
Simplifying access to cross-border healthcare: a Czech proposal
Переглядів 21Місяць тому
In this quarterly bonus episode of Rare on Air, Julien Poulain hands over to Ines Hernando, EURORDIS ERN and Healthcare Director. Ines speaks with Anna Arellanesová (Chair of Rare Diseases Czech Republic (vzacna-onemocneni.cz/) ) and Ladislav Švec (Director of the Czech National Contact Point for Cross-Border Healthcare (www.kancelarzp.cz/app/) ). Together, they discuss the intricacies of cross...
EU Action Plan
Переглядів 20Місяць тому
10 minutes with Rhiannon Walls: EU Action Plan In this May's episode of 10 Minutes With, Host Rhiannon W. is joined by EURORDIS Public Affairs Director Valentina Bottarelli, to breakdown the topic of the EU Action Plan on Rare Diseases. What is an EU Action Plan? Where does the term come from? Why do we need it? And, what can I do about it? Find out about all this and more.
Patient Partnership Webinar: Go East! Project by ERN Lung
Переглядів 672 місяці тому
Join Gergely Meszaros (European Reference Networks (ERN) Lung project manager and patient advocate) and Francesco Bonella (Respiratory Physician and Coordinator of the Core Network Sarcoidosis) for a Webinar on the Go East! Project. This patient-led initiative aims to raise awareness about ERNs among health professionals in Eastern European countries with the objective of having professionals f...
Ayça Şahin's story and what our survey reveals about long diagnostic journeys
Переглядів 72 місяці тому
In this episode of Rare on Air, host Julien Poulain explores the latest findings from EURORDIS Rare Barometer’s extensive survey on the diagnostic journeys of over 10,000 people across Europe, either living with a rare disease or as a close relative of someone who does. Julien first speaks to Ayça Şahin, a PhD student in neuroscience living in Turkey with Spinal Muscular Atrophy (SMA), who shar...
Eurordis Wellbeing Partnership Network
Переглядів 262 місяці тому
Eurordis Wellbeing Partnership Network
Eurordis on Mental Health
Переглядів 392 місяці тому
Eurordis on Mental Health
Mental Health Podcast
Переглядів 312 місяці тому
Mental Health Podcast
Highly Specialised Care Podcast
Переглядів 112 місяці тому
Highly Specialised Care Podcast
ERDERA 101 Podcast
Переглядів 362 місяці тому
ERDERA 101 Podcast
Rare Barometer Webinar on the results of the NBS survey
Переглядів 733 місяці тому
Rare Barometer Webinar on the results of the NBS survey
Positively styling life with lymphedema: Nicole Faccio
Переглядів 82 місяці тому
Positively styling life with lymphedema: Nicole Faccio
In Conversation: Virginie Bros-Facer and Avril Daly
Переглядів 663 місяці тому
In Conversation: Virginie Bros-Facer and Avril Daly
Access to Treatments
Переглядів 653 місяці тому
Access to Treatments
The impact of an ultra-rare condition: Fatal Familial Insomnia
Переглядів 302 місяці тому
The impact of an ultra-rare condition: Fatal Familial Insomnia
Patient Partnership in Healthcare Webinar - Patient Journeys
Переглядів 2234 місяці тому
Patient Partnership in Healthcare Webinar - Patient Journeys
Ethics and Informed Consent Meetup 14/03/24
Переглядів 164 місяці тому
Ethics and Informed Consent Meetup 14/03/24
Patient Partnership Pills: ERN NMD Rehabilitation Summer School, why is this a good practice?
Переглядів 194 місяці тому
Patient Partnership Pills: ERN NMD Rehabilitation Summer School, why is this a good practice?
EURORDIS Patient Partnership Webinar - Good Practices - Educational Programmes
Переглядів 324 місяці тому
EURORDIS Patient Partnership Webinar - Good Practices - Educational Programmes
EURACAN Registry: Developing a long-term vision together
Переглядів 22 місяці тому
EURACAN Registry: Developing a long-term vision together
Championing the Rare
Переглядів 1474 місяці тому
Championing the Rare
MEP Brando Benifei - EURORDIS Black Pearl Awards 2024 Honorary Patron
Переглядів 134 місяці тому
MEP Brando Benifei - EURORDIS Black Pearl Awards 2024 Honorary Patron
Leif's story
Переглядів 22 місяці тому
Leif's story
It's Rare Disease Day 2024!
Переглядів 32 місяці тому
It's Rare Disease Day 2024!

КОМЕНТАРІ

  • @Irenaherman-x6q
    @Irenaherman-x6q 7 днів тому

    I am forever grateful for your help in treating my TMAU. Dr okouromi, Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life. ✅✅

  • @Irenaherman-x6q
    @Irenaherman-x6q 7 днів тому

    I am forever grateful for your help in treating my TMAU. Dr okouromi, Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life. 27:32 27:32 27:32

  • @Irenaherman-x6q
    @Irenaherman-x6q 7 днів тому

    I am forever grateful for your help in treating my TMAU. Dr okouromi, Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life. 0:02 0:02

  • @Irenaherman-x6q
    @Irenaherman-x6q 7 днів тому

    I am forever grateful for your help in treating my TMAU. Dr okouromi, Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life.

  • @DonnaPerry-n8o
    @DonnaPerry-n8o 7 днів тому

    Hello I'm writing from Calgary AB Canada, I Thank God for directing me to Dr okouromi on UA-cam who sent me herbal supplements and cured me from (TMAU) with his herbs in less than 3 weeks. GOD WILL BBLESS YOU..💯❤‍🩹

  • @DonnaPerry-n8o
    @DonnaPerry-n8o 7 днів тому

    Hello I'm writing from Calgary AB Canada, I Thank God for directing me to Dr okouromi on UA-cam who sent me herbal supplements and cured me from (TMAU) with his herbs in less than 3 weeks. GOD WILL BBLESS YOU..💯❤‍🩹

  • @DonnaPerry-n8o
    @DonnaPerry-n8o 7 днів тому

    Hello I'm writing from Calgary AB Canada, I Thank God for directing me to Dr okouromi on UA-cam who sent me herbal supplements and cured me from (TMAU) with his herbs in less than 3 weeks. GOD WILL BBLESS YOU.. ....❤❤❤❤❤

  • @DonnaPerry-n8o
    @DonnaPerry-n8o 7 днів тому

    Hello I'm writing from Calgary AB Canada, I Thank God for directing me to Dr okouromi on UA-cam who sent me herbal supplements and cured me from (TMAU) with his herbs in less than 3 weeks. GOD WILL BBLESS YOU.. ....❤❤❤❤❤

  • @DonnaPerry-n8o
    @DonnaPerry-n8o 7 днів тому

    Hello I'm writing from Calgary AB Canada, I Thank God for directing me to Dr okouromi on UA-cam who sent me herbal supplements and cured me from (TMAU) with his herbs in less than 3 weeks. GOD WILL BBLESS YOU.. 🙏🙏❤❤❤

  • @DonnaPerry-n8o
    @DonnaPerry-n8o 7 днів тому

    Hello I'm writing from Calgary AB Canada, I Thank God for directing me to Dr okouromi on UA-cam who sent me herbal supplements and cured me from (TMAU) with his herbs in less than 3 weeks. GOD WILL BBLESS YOU.... 🙏🙏🙏

  • @VICTORGATI-s2s
    @VICTORGATI-s2s 12 днів тому

    Hello, I hope you are all well, my son was diagnosed in 2014 with FOXP1 syndrome, we are from Santiago de Chile.

  • @Irenaherman-x6q
    @Irenaherman-x6q 17 днів тому

    **I am forever grateful for your help in treating my TMAU. Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life.😷😷😷😷😷😷**

  • @Irenaherman-x6q
    @Irenaherman-x6q 17 днів тому

    **I am forever grateful for your help in treating my TMAU. Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life.😷😷😷😷😷😷**

  • @Irenaherman-x6q
    @Irenaherman-x6q 17 днів тому

    **I am forever grateful for your help in treating my TMAU. DR OKOUOMI, Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life....😘😘😘😘😘😘😘***

  • @Irenaherman-x6q
    @Irenaherman-x6q 17 днів тому

    **I am forever grateful for your help in treating my TMAU. DR OKOUOMI, Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life....😘😘😘😘😘😘😘***

  • @ZnanAushz
    @ZnanAushz 19 днів тому

    Dr okouromi, your dedication, compassion, and kindness have made a significant impact on my well-being. I am thankful for your unwavering support and encouragement throughout my journey.....💮💮💮💮

  • @ZnanAushz
    @ZnanAushz 19 днів тому

    Dr okouromi, your dedication, compassion, and kindness have made a significant impact on my well-being. I am thankful for your unwavering support and encouragement throughout my journey.....💮💮💮💮

  • @ZnanAushz
    @ZnanAushz 19 днів тому

    Dr okouromi, your dedication, compassion, and kindness have made a significant impact on my well-being. I am thankful for your unwavering support and encouragement throughout my journey.....💮💮💮

  • @ZnanAushz
    @ZnanAushz 19 днів тому

    Dr okouromi, your dedication, compassion, and kindness have made a significant impact on my well-being. I am thankful for your unwavering support and encouragement throughout my journey.....💮💮💮

  • @ZnanAushz
    @ZnanAushz 19 днів тому

    Dr okouromi, your dedication, compassion, and kindness have made a significant impact on my well-being. I am thankful for your unwavering support and encouragement throughout my journey.💮💮💮

  • @ZnanAushz
    @ZnanAushz 19 днів тому

    Dr okouromi, your dedication, compassion, and kindness have made a significant impact on my well-being. I am thankful for your unwavering support and encouragement throughout my journey.💮💮💮

  • @ZnanAushz
    @ZnanAushz 19 днів тому

    Dr okouromi, your dedication, compassion, and kindness have made a significant impact on my well-being. I am thankful for your unwavering support and encouragement throughout my journey.......⚛

  • @ZnanAushz
    @ZnanAushz 19 днів тому

    Dr okouromi, your dedication, compassion, and kindness have made a significant impact on my well-being. I am thankful for your unwavering support and encouragement throughout my journey.......⚛

  • @Irenaherman-x6q
    @Irenaherman-x6q 19 днів тому

    I am forever grateful for your help in treating my TMAU. Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life......🥰🥰🥰🥰

  • @Irenaherman-x6q
    @Irenaherman-x6q 19 днів тому

    I am forever grateful for your help in treating my TMAU. Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life......🥰🥰🥰🥰

    • @luzaydagomezlopez3480
      @luzaydagomezlopez3480 9 днів тому

      Ayúdame por favor, cuál es el tratamiento, e intentado todo y no he logrado mejorar los síntomas, por favor ayúdame

    • @Irenaherman-x6q
      @Irenaherman-x6q 9 днів тому

      @@luzaydagomezlopez3480 Contact dr okouromi on UA-cam, him has the best treatment 💯❤️❤️❤️❤️

    • @esmaahmet7337
      @esmaahmet7337 5 днів тому

      ​@@luzaydagomezlopez3480did you tried vitamin b2 And activated charcoal And kombucha I order them but didn't try yet, i hope this help you.

  • @VienesoVans
    @VienesoVans 28 днів тому

    which countries in Europe use HTA (health technology assesment) to base their reimbursement decisions and which just use them for recommendations? thank you

  • @luciekrocova5042
    @luciekrocova5042 2 місяці тому

    She is a member of the Czech communist party, but so was our president. And it is not true, that the majority of the Czech people do not want to have anything in common with him. The same goes for her.

    • @FOUSSUOF
      @FOUSSUOF Місяць тому

      Prezident, už dávno členem KS není. Sám z ní ní ani nevystoupil, nařídil mu to, jako vojákovi, zákon. Petr Pavel je oportunista.

  • @MOoooo-ol1uu
    @MOoooo-ol1uu 2 місяці тому

    Coming across your holistic & alternative medicine was indeed a blessing.I cured my chronic Bad breath/halitosis & Body odor smell on @DR.UWENBOHERBALHOME UA-cam page..🎉🎉🎉🎉❤

  • @MOoooo-ol1uu
    @MOoooo-ol1uu 2 місяці тому

    It wasn’t easy living with embarrassment, bullying in high Shcl from friends, co-worker.I cured my Body odor & Bad breath smell with alternative herbs & diet protocol on DR.UWENBOHERBALHOME UA-cam page…🎉🎉🎉🎉 0:01 0:01 0:01

  • @gheorghemeties-qk8md
    @gheorghemeties-qk8md 3 місяці тому

    Fica Voevodului de Alba~Iulia Mihai l Sucesoarea la tron .🫅❤

  • @user-cs1ko6gh3e
    @user-cs1ko6gh3e 3 місяці тому

    Hello. I am from Kazakhstan. I had a strong sweat odor (tmau). It helped me reduce the odor by 80% and sweat less. Probiotic (bacillus coagulans 6 billion cfu). This is not an advertisement.😊 

  • @mizantropsatrap
    @mizantropsatrap 4 місяці тому

    Za njihovu decu

  • @gladisrivera8724
    @gladisrivera8724 4 місяці тому

    Sra metiche ,apoyando a la Claudia Ortiz en el Salvador 🇸🇻,que trabaje en sus asuntos y no se meta con los Salvadoreños, dejemnos en paz, aquí amamos a NAYIB BUKELE,

  • @IN-KOGNITO
    @IN-KOGNITO 5 місяців тому

    ua-cam.com/video/gANFSlGvcgM/v-deo.html

  • @user-uc6sm1mz7r
    @user-uc6sm1mz7r 5 місяців тому

    Бог дуго трпи ал’ јако бије!!!

  • @nikodimus86
    @nikodimus86 5 місяців тому

    Iznenađen sam koliko dobro govori engleski. Bolje nego suprug. Naravno, svako uplitanje u NVO sektor više nanosi štete ugledu nego koristi. Ovo za brisanje granica je vrlo kontroverzno, svako spominjanje prihvatanja i empatije treba čoveka da natera na razmišljanje, šta se krije iza toga. U svetu je komercijalizacija empatije vrlo unosan biznis.

  • @marijalosh559
    @marijalosh559 5 місяців тому

    Your husband is one of the causes of many people in Serbia, to be sick! Why you don't do something for them, instead of telling us all these lies? Are you living in Serbia? If you do, open your eyes and see what is going on around you! Coming out with these cheap stories, just makes people angry!

  • @jitkakonarikova5534
    @jitkakonarikova5534 6 місяців тому

    Katerina je super ,co ji kritizujes ze je komunistka je to mlada zena a vi co mluvi podivej se napred sam na sebe a pak kritizuj ubozaku.

  • @sabisabi00
    @sabisabi00 6 місяців тому

    Rareconnect Tmau community retired in December 2023 . Is there any other tmau community?

  • @bogistan4406
    @bogistan4406 6 місяців тому

    TELL US HOW MUCH MONEY YOU GOT TO MARY FOR DICTATOR - MONSTER AND ACTING HIS WIFE?

  • @pasbesan
    @pasbesan 6 місяців тому

    Бежи бре сподобо нико те не воли.

  • @djordjeprokin1994
    @djordjeprokin1994 6 місяців тому

    Господе Боже, који је ово енглески изговор?!

  • @beautypablotamarini7315
    @beautypablotamarini7315 6 місяців тому

    I HVALA!!!

  • @beautypablotamarini7315
    @beautypablotamarini7315 6 місяців тому

    B R A V O

  • @gaeko0425
    @gaeko0425 6 місяців тому

    The reason why this disease is lonely is that even the closest family members do not understand. Obviously, people around me react and my family feels it, but they don't tell me honestly. It's even worse for me not to be honest because I'm afraid it will hurt me.

    • @ZaydMujahid
      @ZaydMujahid 6 місяців тому

      This shit is honestly the worst thing ive ever had to deal with, im jn highschool rn and went from a social kid who is liked and talked to by everyone, to a kid that nobody even wants to be near. I cant do this anymore

    • @christylopez3400
      @christylopez3400 6 місяців тому

      @zaydmujahid Try matcha mushroom drink and then take inno cleanse digestive aid try this warning you will experience more reactions during the due off process of bad bacteria being flushed out take chrophyll pills during the process if possible to help ease BO during the process stay strong

  • @jaroslavpelc4035
    @jaroslavpelc4035 7 місяців тому

    Vše nejlepší, hlavně zdraví, štěstí a pohodu v roce 3024 celé rodině!🍀

  • @MatkoJovanovic-mj4gm
    @MatkoJovanovic-mj4gm 7 місяців тому

    ☕💻📑🌄🎓

  • @MatkoJovanovic-mj4gm
    @MatkoJovanovic-mj4gm 7 місяців тому

    Nasa dama srbije je nasa kraljica i zena pre svega i majka nad majkama srbije TAMARA VUCIC NESME DA STANE I SVE NAS ZENE I MAJKE . NASE SRBIJE DA BUDU PODRSKA NASOJ DECI .

    • @user-sv9ic8dv2k
      @user-sv9ic8dv2k 7 місяців тому

      TAKO JE❤

    • @marijalosh559
      @marijalosh559 7 місяців тому

      Jeste, Srbija nesme da stane da bije nasu decu, dok njihova deca zive u blagostanju, dok se skoluju po inostranstvu i vode lagodan zivot! Tamara Vucic prica o pomoci zena i majki, dok je saradnica Sapica opljackala 5 miliona, za pomoc mladima, socijalnim slucajevima, zena i prevenciji nasilju u porodicI! Svi su oni isti pricaju lazne prica a u sustini, bezdusno pljackaju ovaj narod! Ovde ne postoje nasa deca, ovde postoje njihova i nasa desa, kada kazu za nasu decu to msli na SNS sektu i njihovu dece, a ne na nsu decu obicnih gradjana!

    • @tekelmekel
      @tekelmekel 6 місяців тому

      🤣😭

    • @marijalosh559
      @marijalosh559 6 місяців тому

      Pa oni i ne staju, muz joj pljacka Srbiju, i nihova se deca salju u inostranstvu na skolovanje, a sta je sa onom decom ciji roditelji primaju minimalce?Jel i oni ne treba da stanu?

    • @user-sv9ic8dv2k
      @user-sv9ic8dv2k 6 місяців тому

      TAKO JE

  • @tarocchistarsalephtarocchi3026
    @tarocchistarsalephtarocchi3026 7 місяців тому

    😂

  • @darkovbarbora
    @darkovbarbora 8 місяців тому

    ua-cam.com/video/ToklTUU6-z0/v-deo.html