Welcome to the new aHUS alliance Website

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WELCOME

This is where the aHUS alliance will connect, inform and collaborate with the Global aHUS community for the benefit of all those affected by aHUS. The alliance was founded on the principle that there were things that national organisations could do better by working together than alone, and over the past three years that has led to initiatives such as the

  • Global Patient Voice Surveys

  • International aHUS Awareness Day

  • Global Webinars

Whilst national aHUS advocacy groups remain paramount for supporting aHUS patients and their families in each country, the alliance is there to support them through education and share of knowledge, as well as provide links to international aHUS clinical and research networks.

This website will play a big part in doing that.

This website will also reflect and demonstrate the action being taken around the world to raise the profile of our rare disease, and the ways to deal with its impact on so many lives.

Running a patient support organisation is not an easy thing to do. All organisations affiliated to the alliance depend on volunteers, who have themselves been deeply affected by aHUS in some way or other, but who are willing to give their time, knowledge and skills to help good to come together for all.

On this official  aHUS website launch day who knows what the future will bring; but whatever it might be,the alliance’s new window to the world of aHUS is now here to become an important part of it.

aHUS alliance

Welcoming and supportive statements received from some of the affiliates of the aHUS alliance

“aHUS Canada is part of the aHUS Alliance and excited that the Alliance website is being launched. Together with other countries, we look forward to working together to bring global awareness and share information to improve the lives of aHUS patients. Although the disease is rare, together we are strong!”

                                                                                                                       -Margriet and Michael Eygenraam, aHUS Canada

“Created as a central networking center, the new aHUS Alliance website provides a robust information hub for all interested in the issues and needs within the atypical HUS rare disease community.   As the site for aHUS global action grows to include more assets, current and newly emerging patient organizations worldwide will have the support and expanded opportunities to collaborate on initiatives and efforts to benefit aHUS patients globally.”

                                                                                                                                   -Linda Burke, The Atypical HUS Foundation

«Пациенты с аГУС, их родные и многие другие люди, неравнодушные к проблемам «редких» больных, из России приветствуют своих друзей со всего мира. Пациентская организация «Другая Жизнь» является первой и единственной общественной организацией в России, оказывающей помощь пациентам с ПНГ и аГУС. Наше сообщество считает важным, необходимым и полезным стать частью глобального общества в лице «аГУС Альянса». «Другая Жизнь» надеется на взаимную пользу от нашей совместной деятельности. Обмениваясь успешным опытом и эффективными практиками, каждый в своей стране мы сможем лучше создавать необходимые условия, чтобы наши пациенты Жили с аГУС, а не болели аГУС.»

(Russian aHUS patients, their families and lots of others who do care about people with rare diseases are happy to greet their friends from around the world. Another Life Patient Organisation is the first and only Russia’s NGO that helps patients with PNH and aHUS. Our community believes it vital, essential and useful for us to become a part of the international community represented by aHUS Alliance. Another Life hopes for a win-win relationship here. Sharing our successful experience and efficient practices, the representatives of each nation in the Alliance will be able to progress in creating an environment in their home countries that would enable aHUS patients to live with the disease not to suffer from it.)

                                                                                                                               -Anastasiya Tatarnikova, Another Life, Russia

“De  kennisgroep aHUS van de Nierpatiënten Vereniging Nederland (NVN) is bijzonder blij dat de website van de aHUS Alliance van start gaat. De aHUS Alliance is een internationaal samenwerkingverband  van patiënten met aHUS. De NVN maakt hiervan deel uit, om kennis te delen en ervaringen uit te wisselen. Samen staan we sterker!”

                                                                                                                           -Marjolein Storm, NVN aHUS Knowledge Group

” Hi from aHUSUK, supporters of the aHUS alliance from its outset; and delighted to be a part of the launch of its own website.  We wish the alliance well and  to thrive and build up its activities and reputation in the global aHUS community “

                                                                                                                             -Len Woodward, aHUSUK / Answers for aHUS

“Les patients belges atteints d’un SHUa font partie de l’Alliance SHUa depuis le début. Nous sommes ravis que notre tout nouveau site est prêt à être lancé.

Tous ensemble, nous pouvons trouver des solutions, tous ensemble, nous sommes plus forts contre les autorités, tous ensemble,  nous pouvons comparer nos témoignages, tous ensemble, nous pouvons partager nos informations, tous ensemble, nous sommes l’Alliance.”

(The aHUS patients from Belgium are part of the aHUS Alliance from the beginning.  We are pleased that our brandnew website is being launched.

All together, we can find solutions, all together we are stronger against authorities, all together we can compare our testimonies, all together we can share informations, all together we are The Alliance.)

                                                                                                                                -Anne-Sophie Van Turenhoudt, AIRG Belgium

“これからさらに世界中のaHUSに関わる人たちが力を合わせて。

すべての患者さんが必要な治療を受けられますように。”

(Let’s join forces than ever before! May all the aHUS patients receive appropriate treatment.)

                                                                                                                                                                      -Yaeko Motoyoshi, Japan

“Connecting people, information, and organizations, this website encourages all patients and nations to have an equal voice with our goals to share insights, open dialogue, build relationships, and partner within a platform dedicated to advancing aHUS knowledge and supporting global aHUS advocacy.”

                                                                                                                                   -Jeff Schmidt, The Atypical HUS Foundation

aHUS भारत से नमश्कार! हम aHUS संघटन के और संघटन के नए वेबसाइट के हिस्से होकर बहुत खुश हैं। कई और देशों की तरह भारत में भी इस बीमारी का कोई इलाज उपलब्ध नहीं है. इसकी वजह से कई मरीज़ इस बीमारी से बच नहीं पाते।हम यह आशा रखते हैं कि संघटन विश्व भर में ऐसे देशों के मरीजों के लिए इस बीमारी की दवाईयां उपलब्ध कराने के प्रयास जारी रखेगी।

(Hi from aHUS India. We are very happy to be part of the aHUS Alliance and its new website. In India, like in many other countries in the world, there is no complement inhibitor available and as a result, many patients do not survive the onset of this terrible disease.

We hope the aHUS Alliance will continue to advocate to make complement inhibitors available to those affected by this disease across the world without restrictions.)

                                                                                                                  -Kamal D. Shah, The Atypical HUS India Foundation