Rare Disease Day is right around the corner. The world will join together on February 28, 2017 to raise awareness for rare diseases. The theme for the upcoming Rare Disease Day is “Research”.
Added by Jeff Schmidt on December 26, 2016 at 5:47pm — No Comments
(Updated August 9, 2016 - new coloring page added)
The second annual aHUS Awareness Day is coming up fast. The world will join together on September 24, 2016 to raise awareness for aHUS. The global theme for aHUS Awareness Day this year is ‘Rise above aHUS’.
The global aHUS Alliance (the umbrella organization of Atypical Hemolytic Uremic Syndrome Patient Organizations from around the…Continue
Added by Jeff Schmidt on August 3, 2016 at 3:00pm — No Comments
Here is the story of an amazing and courageous family from India. Deepika and Anil Jaiswal have a young son Aadhyan who has had aHUS since he was 1 year old. He is now close to 6. But what’s different for Aadhyan, is that unlike those in the United States (and…
Added by Jeff Schmidt on June 21, 2016 at 7:07pm — No Comments
Recently, Health Minister Dr. Eric Hoskins of Ontario, Canada announced that Soliris would finally be made available to those on dialysis and in need of a kidney transplant. This would be good news except that these patients will get a maximum of 6 months of…Continue
In February, 2015, the Ontario government announced that it would provide interim funding for Soliris for aHUS patients who meet “defined clinical criteria”. This was great news for those who were new patients with aHUS. But those…Continue
Added by Jeff Schmidt on May 2, 2016 at 7:00pm — No Comments
Here’s a new way you can help our friends from Australia. In March 2016 there will be a meeting by the PBAC to determine if Soliris should be provided to aHUS patients who are on dialysis. You can send a personal submission to the PBAC to show your support of our Australian friends. We only have until Feb 10, 2016 to send them so please hurry and ask your family and friends to help. I listed my answers to some of the questions that you may have trouble thinking…Continue
Added by Jeff Schmidt on January 27, 2016 at 2:12pm — No Comments
Rare Disease Day is coming soon. This year is extra rare as the last day of February is the 29th.
For those who would like to participate in this year’s video project I’m…Continue
Added by Jeff Schmidt on January 12, 2016 at 8:00pm — No Comments
“The fight doesn’t stop until everyone is safe!” That’s what my friend from Australia, Sarah Mulligan said over a year ago when we were trying to convince the Australian health minister to fund Soliris for aHUS patients. That held true back then and it holds true now.
A big battle was won in Australia on December 17, 2015 when the PBAC recommended aHUS patients be allowed to continue…Continue
Our friends from AHUS Patient Support Group Australia (aPSGA) met with Alex Best from the office of Health Minister Sussan Ley to discuss the policy that will force those who started Soliris back on December 1st, 2014, to stop at the end of November to "see what happens". The meeting seemed to go well and they asked him to postpone taking people off drug at this time of year since there is less staff available over Christmas and it is not an ideal time…Continue
Added by Jeff Schmidt on November 18, 2015 at 7:08pm — No Comments
Our friends in Australia who started Soliris treatments last December 1st are about to lose access to those treatments at the end of November. Please send their Health Minister Sussan Ley an email like the one below to show your support and to put pressure on. Feel free to copy the exact email but replace my story (in red) with your personal story. Your personal story just may be the one that makes a difference!
And please sign the petition that will…
Added by Jeff Schmidt on November 2, 2015 at 8:00pm — No Comments
December 1, 2014 marked a very important day in Australia. That was the day their government finally started providing access to the life-saving drug Soliris (eculizumab) for some patients with aHUS in Australia. This has saved lives. But according to policy, those who started Soliris last December will be forced to stop their treatments at the end of November (after 12 months) unless their aHUS is active. That will likely be everyone as Soliris effectively…Continue
Americans, by now you realize the first ever aHUS Awareness Day on September 24, 2015 is fast approaching. We have another project for this special day (or any day you’re available) that we’d like to see everyone get involved in.
For this project, Alyssa Deffenbaugh and I would like everyone to take the aHUS fact sheet provided by the aHUS Alliance and find at least one person that…Continue
Hey Americans! We have another project for the first ever aHUS Awareness Day on September 24, 2015. Alyssa Deffenbaugh and I have been working together through the Atypical HUS Foundation on ideas for this special day.
For this project, Alyssa came up with the brilliant idea of getting the kids involved. She would like them to draw a picture that shows what it means to be healthy or maybe how they feel about having…Continue
Calling all Americans! The first ever aHUS Awareness Day is coming up fast. It is September 24, 2015. The world is joining together that day to raise awareness for aHUS.
The global theme for aHUS Awareness Day is ‘Communication’. There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis, access to treatment and…Continue
Added by Jeff Schmidt on August 24, 2015 at 7:30pm — No Comments
I’d like to introduce you to some athletes from across the world who are making a difference by raising awareness for aHUS and other rare diseases. We often think of athletes as selfish and only being interested in making money. But I’d like to show you some athletes who are showing what incredible role models they are.
Me gustaría presentarles a algunos atletas de todo el mundo que están…Continue
Added by Jeff Schmidt on August 6, 2015 at 7:02pm — No Comments
The situation in Sweden is bad. Though those with aHUS who are presently on Solris will remain on it, no new patients will have access to Soliris. This is unacceptable. Stefan Persson, the President of Sweden’s aHUS support group AHUS-FFII is fighting hard for all those with aHUS. We need to help him and all our friends in Sweden.…
Added by Jeff Schmidt on June 25, 2015 at 2:46pm — No Comments
We already were aware of the unequal care of those with aHUS in Sweden. It seemed like where you lived (or your postal code) determined whether Soliris would be available. This was going to be a hard enough fight.
But now I’m told by Stefan Persson, the President of Sweden’s aHUS support group AHUS-FFII, that the Swedish Health Minister has decided that no new patients will receive…Continue
Added by Jeff Schmidt on June 10, 2015 at 5:37pm — No Comments
I’d like to introduce you to Stefan Persson. He lives in Sweden and is the founder and President of the Swedish aHUS support group Ahus-ffii. This group was started during the summer of 2014.
In 1993, Stefan had a daughter who got sick with aHUS (though diagnosed with TTP-HUS)…Continue
Those wondering what's going on in Ontario, Canada with their quest to get Soliris, here is the public response from Dr. Hoskins' office to one of my posts to his Facebook page. It's full of a lot of stuff hard to read but he does say that Soliris is available to those who qualify. And he provides a link to what he says describes the conditions to receive Soliris. But if you go to this link you will see that they are talking about Soliris for PNH, not aHUS. Of…Continue
Check out what our friends in India did back in February. We all know that dialysis can be very hard on the body and keep you from doing every day activities let alone any kind of exercising. Well our friend Kamal Shah who runs the Atypical HUS India Foundation is also the co-founder of NephroPlus which is India’s leading dialysis network provider. And NephroPlus organized the first ever Dialysis Olympiad in India that was held on Feb 15, 2015. It was a huge…Continue