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uisp nuoto Scandicci per trisomia 9 a mosaico by Rare Disease Day

Uisp nuoto Scandicci per trisomia 9 a mosaico
hands across the sand - 5433 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS #joinHANDS
Physiology @ Rare Disease Day by Rare Disease Day

Department of Physiology (physiomics.eu) of the Radboud University Medical Center at Rare Disease Day 2014!
One voice gospel choir di Firenze by Rare Disease Day

One voice gospel choir per trisomia 9 a mosaico - rare disease day 2015
hands across the sand - 5170201 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS

#joinHANDS
DEBRA CZ and EB Centrum CZ join hands for butterfly children by Rare Disease Day

DEBRA CZ and EB Centrum CZ work in Czech Republic for peaple with rare diseas Epidermolysis Bullosa. Foto is from friendly metting of both organisations. We wish nice rare diseases day to all of you!
hands across the sand - 2015 - 5161166 by bill doyle

the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight

 

glenelg beach, south australia, australia

 

#joinHANDS

#oilfreeseas

#oilspillsR4eva
All American Boy by Rare Disease Day

Xavier is 6 with the rare genetic syndrome Schinzel-Giedion Syndrome. He is one of approximately 60 children ever diagnosed in the world.
Burson-Marsteller Brussels raising hands for better care! by Rare Disease Day

Burson-Marsteller Brussels provides pro bono support and social media coverage to EURORDIS for the organisation of the 2015 Rare Disease Day
Joining Hands in Lexington, MA! by Rare Disease Day

The Business Development team at Shire Massachusetts joining hands to support Rare Disease Day!
hands across the sand - 4929 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS #joinHANDS
hands across the sand - 5170133 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS

#joinHANDS
EU 2020 HR: Croatian Presidency of the Council of the EU by Rare Disease Day

Rare diseases day
FLASH MOB ORE 12.00 by Rare Disease Day

Event from Catania - Italy
hands across the sand - 5000 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS #joinHANDS
"Hands Across the Land": National Day of Action to Say #NoKXL by Bold Nebraska

"Hands Across the Land," National Day of Action to Say #NoKXL, May 17, 2014, on the Bob Kerrey Bridge in Omaha, Nebraska. Photo by J. Grace Young / Bold Nebraska

#NoKXL, #JoinHANDS
Burson-Marsteller Brussels joining for better care! by Rare Disease Day

Burson-Marsteller Brussels provides pro bono support to EURORDIS for the organisation of the 2014 Rare Disease Day
Our Lexi girl!! by Rare Disease Day

This is Alexis Grace Drumm, she has a rare form of Leukodystrophy, (Vanishing Whute Matter Disease. We were told when Lexi was 14 mths old that she would not live past 3 yrs, she turned 12 in January. Everyday is a struggle for Lexi but she always seems to have that precious smile of hers.
CRESSC TORINO- ITALY by Rare Disease Day

CRESSC - Expertise Centre Syringomyelia and Chiari Syndrome of Turin - meets young patients in one of the most important square of Turin

 

Doctors and patients together around the historic city center with the purpose to raise awareness the citizens about Rare Diseases: Day by Day, Hand in Hand.
hands across the sand - 5302 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS

#joinHANDS
hands across the sand - 5284 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS

#joinHANDS
Gli amici di Grazia MSA C by Rare Disease Day

Gli amici di Grazia da Bagno a Ripoli (firenze) MSA C
"OUT OF DARKNESS" by Rare Disease Day

Patients, family members, physicians, researchers, students and citizens together to better care at the Faculty of Medicine and Surgery | AOU Policlinico of Modena in collaboration with the Center for Rare Lung Diseases, and the Association of Donor organs, tissues and cells.
Stay Strong by Rare Disease Day

I was diagnosed with Klippel-Feil Syndrome at the age of nine. I am twenty-two and my hands and feet are numb. I have lost my sense of taste along with heat/cold sensation. Since the only known care for KFS is palliative, I have a team of doctors that are working to keep me as healthy as I can be. Pain is my constant companion.
KFS Thomas by Rare Disease Day

Thomas, age 4, has had several congenital issues since birth that in one way or another have been related to him having the rare syndrome of Klippel-Feil Syndrome. There is little known about this syndrome and the depth that it effects people, affecting 1 out of every 40,000. There is even less known on the best way to treat and prevent KFS as well as the pain and degeneration that occurs. My hope is that Thomas can be an example of overcoming this rare syndrome with his charismatic personality and loving smile.
hands across the sand - 5170027 by bill doyle

local band jupiter music entertain the crowd

 

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS #joinHANDS
hands across the sand - 2015 - 1061 [mono] by bill doyle

the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight

 

glenelg beach, south australia, australia

 

#joinHands

#oilfreeseas

#oilspillsR4eva
Haemophilia Scotland Trustees raise hands for Rare Diseases Day by Rare Disease Day

Haemophilia Scotland is the charity for individuals and families with a bleeding disorder in Scotland (www.haemophilia.scot). There are less than 2,500 people in Scotland diagnosed with any bleeding disorder and all bleeding disorders are rare conditions. The Rare Diseases Day Reception in the Scottish Parliament did a fantastic job highlighting that 300,000 people in Scotland have a rare condition. When Haemophilia Scotland held our Feb Board Meeting we wanted to show our support with a photo of us raising our hands for rare diseases day.
Raise your hands by Rare Disease Day

GSK Rare Diseases Unit supports RD Day
AM FOUNDATION WEBSITE LAUNCH WITH ORPHANAGE KIDS by Rare Disease Day

In memory of our baby of 21 months who suffered with organic aciduria we launched website.
Rare Diseas Day second by Rare Disease Day

:)
WRDD by Rare Disease Day

Creating awareness at Sorensen Elem. School. Whittier, CA. Glucose Transporter Type 1 Deficiency Syndrome
hands across the sand - 5329 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS #joinHANDS
DEBRA UK Raises and Joins Hands for Rare Disease Day 2015 by Rare Disease Day

DEBRA UK supports individuals and families living wih Epidermolysis Bullosa (EB) a group of genetic skin conditions which cause the skin to blister and tear at the slightest touch.
The AKU Society Raise Hands for Rare Disease Day by Rare Disease Day

Alkaptonuria (AKU) is a very rare and debilitating disease. We raise our hands in support of our patients, and in acknowledgement of all the different rare diseases there are in the world. Raise your hands and support one another!
UMF ”Carol Davilla” Bucuresti by Rare Disease Day

With the help and support of Mr. Mircea Ioan Popa MD, Ph.D., MPH Professor, Faculty of Medicine Department II / 2, Department Microbiology Member of the University Senate. UMF "Carol Davila" I received these wonderful photos. UMF "Carol Davila" Bucharest (students are in Year 2 different series) raise hands for those with rare diseases. They are with the rare.
IMG_3701-01 by SJH Foto

I super saturated and sharpened the blues in this picture.

Hands of Love by Rare Disease Day

These are the handprints of my special education students at Weller Elementary School. We made this American flag in support of Rare Disease Day!

EVENTO "RARITA" A NAPOLI CON UN CONCERTO 1 MARZO 2020 by Rare Disease Day

Celebrazione della giornata mondiale delle malattie rare organizzata da Aidel22 a Napoli con un concerto musicale.
Raising our hands to Alkpatonuria ( Black Bone Disease) by Rare Disease Day

This gorgeous little 4yr old has Alkaptonuria also known as Black Bone Disease. It's a genetic disease caused by a build-up of acid in the body which attacks bones and other tissue, turning it black and brittle. Currently, his only symptom is black urine - which he thinks is pretty cool and refers to it as his super hero power :)

Please help cure Black Bone Disease - www.indiegogo.com/projects/cure-black-bone-disease-time-i...

 

Join the international AKU community on RareConnect:

www.rareconnect.org/en/community/alkaptonuria-aku
hands across the sand - 2015 - 5161067 by bill doyle

the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight

 

glenelg beach, south australia, australia

 

#joinHANDS

#oilfreeseas

#oilspillsR4eva
hands across the sand - 2015 - 8900 by bill doyle

the wilderness society's 'hands across the sand' event for 2015, highlighting public concern for the potentially disastrous consequences if a spill similar to the deepwater horizon oil-spill in the gulf of mexico was to happen in our waters, given that the company responsible - BP - is currently applying to drill in the great australian bight

 

glenelg beach, south australia, australia

 

#joinHands

#oilfreeseas

#oilspillsR4eva
hands across the sand - 5239 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS

#joinHANDS
Luka et Anouk by Rare Disease Day

Notre fils Luka est porteur du syndrome de Williams.

C'est un petit garçon très joyeux. Sa soeur Anouk est formidable ! :)
friends by Rare Disease Day

for our Margherita T9M
hands across the sand - 5170308 - [mono] by bill doyle

face painting stall, hands across the sand - an event organised by the wilderness society, south australia

 

the rally called on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS #joinHANDS
hands across the sand - 5209 by bill doyle

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS

#joinHANDS
NPS by Rare Disease Day

Andreea raises her hands for Rare! She's 28 and has nail-patella syndrom with new mutation.

hands across the sand - 5083 by bill doyle

australian greens senator penny wright

 

hands across the sand, an event organised by the wilderness society, south australia

 

the rally calls on the community to 'join hands in support of a clean energy future and to oppose BP's plans to begin deepsea drilling in the Great Australian Bight whale nursery and siesmic testing in the sensitive waters off Kangaroo Island by Bight Petroleum, which are planned to begin in 2015'

 

semaphore foreshore reserve and beach, adelaide, south australia

 

hands across the sand

 

#BP_BIGRISKS #joinHANDS
Day by Day, Hand in Hand by Rare Disease Day

In front of the Sacred Heart Cathedral, on 28th February 2015.

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