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
Has anyone taking Soliris found any typical methods of immune boosting, ie avoiding gluten, helpful? My 11 year old daughter is on a bi-weekly dose of Soliris and spikes fevers intermittently which then require heavy doses of antibiotics along with a trip to the hospital. I hate to cause her any more discomfort, but I was wondering if any one had found any homeopathic ways to boost the immune system while on Soliris.
2016 aHUS Awareness Day - 24 September
Information & Resources
The aHUS Alliance, an international group of atypical HUS patient organizations, has announced its 2nd annual global aHUS Awareness Day campaign will occur on 24 September 2016, dedicated to sharing information and insights into the extremely rare disease…Continue
Added by Linda Burke on August 29, 2016 at 10:00am — No Comments
24 September 2016 will mark the 2nd annual world aHUS Awareness Day. Patient organizations from around the world, in collaboration as the aHUS Alliance, have issued a press release providing details within an PRNnewswire,
From the 2016 August 24 Press Release:
"The aHUS Alliance invites all stakeholders to join together to promote visibility and to highlight insights and…Continue
Added by Linda Burke on August 24, 2016 at 7:50am — 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
Mimi - per headaches....
I've been diagnosed since Feb 2015, and too had headaches for the first 6 months of treatment after I got my infusion. I also take daily antibiotics for chronic infections (I take cipro for pseudomonas). When I first started with the headaches, I took Tramdol before my IV. After awhile, decreased to the point I no longer need it (about 6 months total). Do keep in mind, I am 60, so may not apply in your case. I only had the headaches the day /evening after…Continue
I hope I am posting this correctly. My 10 year old daughter was diagnosed this year with aHUS. She was released from hospital at the end of May. She is currently taking the bi-weekly dose of Soliris and her lab work looks good. However last week she was diagnosed with strep, even though she's on the small dosage of penicillin each day. The strep symptoms are almost gone, but she is complaining of chronic headaches. Is anyone else experiencing chronic headaches, and have…Continue
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
The aHUS Alliance of patient organizations announced on 28 May 2016 the launch of an aHUS global website that will connect, inform and and encourage collaboration among stakeholders within the global aHUS community, for the benefit of all those affected by aHUS. Visit www.ahusallianceaction.org to view this portal of worldwide aHUS connectivity.
While national aHUS advocacy groups remain paramount for…Continue
Added by Linda Burke on June 6, 2016 at 3:04pm — No Comments
24 September 2016 is international aHUS Awareness Day.
This week the aHUS Alliance has announced the theme for the 2016 aHUS Awareness Day as 'Rising above aHUS', with an advocacy campaign symbol of a red balloon to unite messages worldwide. 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 healthcare…Continue
Added by Linda Burke on May 31, 2016 at 9:34am — 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
The aHUS Alliance is pleased to announce that RareConnect will offer a webinar on 21 June at 11 am EST, with aHUS expert Dr. Christoph Licht to present analysis of the 2016 aHUS survey results. The aHUS global survey closed 15 April with 233 responses from 23 countries, responding in 6 languages.
Register here: …Continue
Added by Linda Burke on May 21, 2016 at 1:17am — No Comments
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
A worldwide survey of aHUS adult patients and pediatric caregivers was launched on Rare Disease Day (29 Feb 2016) and continued through 15 April 2016 to accommodate a rollout of survey translations in 6 languages. The survey premise was that patient and caregiver poll responses can provide better understanding and insights into aHUS diagnosis, treatment, and medical care from the patient perspective. A similar effort was conducted in partnership with RareConnect in 2014, with 214…Continue
Added by Linda Burke on April 30, 2016 at 11:30am — No Comments
The Atypical HUS Foundation is pleased to announce that the aHUS Family Conference**, in conjunction with The University of Iowa, will be held in Iowa City, Iowa on November 4-6, 2016 at the Sheraton Iowa City Hotel. Registration is limited, FMI see details at the Eventbrite registration site: http://ow.ly/4n2v06 . Questions about aHUS Family Conference? There is a direct way to “Contact…Continue
Added by Linda Burke on April 25, 2016 at 3:00pm — No Comments
In a 20 April 2016 press release, the Omeros Corporation has announced initiation of “patient dosing in its OMS721 Phase 2 program in corticosteroid-dependent renal diseases. The Phase 2 clinical trial of OMS721, the company's lead mannan-binding lectin-associated serine protease-2 (MASP-2) inhibitor being developed for complement-related diseases…”
From the Omeros press release, “This new trial expands the company's MASP platform,…Continue
Added by Linda Burke on April 21, 2016 at 11:30am — No Comments
2 DAYS LEFT – All aHUS adult patients and caregivers of pediatric aHUS patients worldwide are invited to participate in the
2016 global aHUS poll at http://ow.ly/YR8JK, survey available in 6 languages.…Continue
Added by Linda Burke on April 13, 2016 at 9:16am — No Comments
aHUS Global Survey – Open through 15 April 2016
Share your aHUS journey, survey in 6 languages (for aHUS Patients & Pedi Caregivers):…Continue
Added by Linda Burke on April 3, 2016 at 1:00pm — No Comments
The following blog was originally posted on the RareConnect global aHUS webpage:
Update: MARCH 30, 2016
NEW - Survey now in 6 languages, with survey end date extended until April 15, 2016 !
There are new 2016 aHUS global survey…Continue
Added by Linda Burke on March 17, 2016 at 12:30pm — No Comments
Hi ! Just hoping someone sees this and has some sort of idea as to what I am talking about. I was diagnosed with atypical HUS June 2015. Since then my kidneys have been improving but I have INTENSE left side pain. It is right below my left kidney. After ct scans, getting my appendix removed and ultra sounds. No one is finding a reason for my pain. I am so frustrated. I am learning what I can about AHUS but does anyone have chronic pain with this disease?