When the six European national aHUS organisations gathered in February 2013 for the first meeting of what was to become the aHUS alliance, they listed several aspirations for the new organisation. These ultimately were turned into a mission statement for the alliance which had three themes. One of the themes was to encourage other nations around the world to form patient groups and advocate for aHUS.
First of all other known national aHUS organisations were invited to affiliate, but it was evident that many countries had no patient group established. It was also evident from all those affiliating that there was no one typical aHUS organisation, each of us had done things differently. The hard part for all was just getting started.
But how might the alliance help emerging patient organisations and find patients/families willing and able to engage as we had done.
A small group of national organisations thought it needed someone with experience of the social media and who also had experience of developing a dialogue with people in non-affiliated countries. They thought that Jeff Schmidt of the USA had ample profile and experience, and he agreed to affiliate to the alliance as aHUS ROW. He would represent emerging nations until they were able to affiliate themselves
Jeff Schmidt aHUS ROW
Jeff tells us about the progress aHUS ROW has made:
“The need for aHUS ROW comes because there are countries around the world that have no aHUS association or any formal support for aHUS patients and their families. There are many people around the world who are feeling alone and looking for support.
ROW stands for Rest of the World. It is an initiative to bring together, those affected by aHUS around the world who don’t have official support in their own country. The first ROW activity effectively started back in 2015 by connecting a few families in New Zealand.
Then Romania started as part of aHUS ROW but quickly developed into an official association that is now affiliated to the aHUS Alliance.
At present there are 14 countries, including New Zealand ,which have patients who are joining together to one day become their country’s advocates including Turkey, Brazil, Pakistan, Bulgaria, Israel, Slovakia, South Africa, United Arab Emirates, Egypt, Iran, China, Finland, Poland and New Zealand.
As aHUS ROW, I act as a first responder to patients/family looking for any support. Once I connect with someone affected by aHUS, I connect them with the association in their country if there is one. If there is no known association, I ask them if they know of others in their country affected by aHUS. I offer to create or help them create a closed Facebook for their country in the hopes of connecting families in that country.
I inquire about their doctor and try to get their contact information for two main reasons:-
• First, it is to get more information about aHUS in that country,
• and second, to give them the link to the group so they can encourage any of their other patients to join.
I also offer to create a public Facebook page to be the public view of aHUS in that country. The closed group is where families can share experiences privately, and the page is to share news with the public (including the rest of the world).
All countries are welcomed and encouraged to participate. Most of the countries within aHUS ROW have no access to eculizumab and by joining together they will be able to create a louder voice.
The support is different for Turkey and Pakistan, who already had some sort of Facebook presence. And for Brazil and Poland, who already had a strong Facebook presence. For the other countries I have either helped or created closed Facebook groups and public Facebook pages for them. Currently I do most of the admin for these groups and pages to show what is needed. But the families of these groups are welcome to take a bigger role when they are able to.
South Africa is the big exception as one individual has stepped up to share news on the public page. This is Erika Pelser (Grandmother of Limari, a young girl with recurring aHUS struggling to get access to eculizumab). We communicate frequently. And we now have our own email address which is listed on the public page.
The Alliance welcomes all those affected by aHUS. It connects people to give them hope.
Support and encouragement is given to those country groups starting out in the hope that one day they will become confident, sustainable and independent. I will create or help those create Facebook groups and pages and the alliance also makes others in their countries aware by featuring them on the “Patient Associations” section of the aHUS Alliance and promote their groups via the aHUS Alliance Facebook page.
Also, as aHUS ROW, I am an affiliate of the alliance on behalf of these groups and can speak for them in alliance activities.”
Jeff Schmidt, lead for aHUS R.O.W., can be contacted at firstname.lastname@example.org for assistance and information on creating an atypical HUS patient advocacy group in countries without such a group.