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Rare disease day by Rare Disease Day

Prune Belly Syndrome is a rare disease. IF the child makes it to 2 yrs of age, there life expectancy is 50%. Levi has beaten the odds!! Celebrating Rare Disease Day.
Razorfish Healthware team supports #RRD by Rare Disease Day

We will continue upload our photos of our team raising and joining hands for a better care!
Girls at the Rome Run4RARE in Rome by Rare Disease Day

UNIAMO Federazione Malattie Rare organizes Rome Run4RARE in Rome
Rare Disease Day Awareness by Rare Disease Day

We did a rare disease awareness shoot for rare disease day and also my accomplishments pertaining to the organizations and Community Partners I am involved in, due to the fact that I was born with four rare pediatric disorders that are recognized on N.O.R.D. If it wasn't for Nord I don't know who I would be today. They helped me come out of my shell and realize that it's okay to be who I am. Today I am now an active patient, volunteer, advocate & Inspiration for people.

Thank you, Thank you!!

 

Ashley Wurtz
Raise hands for Sam vs. VWM by Rare Disease Day

Raising our hands for Sam vs. Vanishing White Matter disease at Epcot. www.facebook.com/SamVsVwm
Maxence - Williams et Beuren by Rare Disease Day

Maxence, syndrome de Williams et Beuren

"Quelques gènes en moins ... ça vous gêne?"
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 II Member of University Senate Pharmacy "Carol Davila" I received these wonderful photos. "Carol Davila" Bucharest (students are in Year 2 different series) raise hands for those with rare diseases. They are with the rare.
An associate special teacher sharing the love to those who are living with a rare disease' by Rare Disease Day
hands across the sand - 5170214 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 2016 - 5210179 by bill doyle

hands across the sand 2016, glenelg beach, adelaide, south australia

 

because BP has no right to risk the great australian bight!

 

BP - of deepwater horizon fame - proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world

 

#joinHANDS

#FightfortheBight
National MPS Society BOD Raises Hands for Rare Diseases by Rare Disease Day

The National MPS Society exists to find cures for MPS and related diseases. We provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases.
Frazer UMC Bible Study Group Raises their Hands In Support of Rare Disease Day! by Rare Disease Day

Martha Colson and her Bible Study Class at Frazer UMC in Montgomery, Alabama are raising their hands in support of Rare Disease Day, February 28. Parry Romberg Syndrome is just one of the 6,500 rare diseases world wide that needs more awareness, support and research!
Corville National School is aware of Rare Disease Day by Rare Disease Day

One of the children in our school has CVID but that does not stop him taking part in all school activities and being a bundle of fun. We are very proud of him.
Feliz con pelo o sin pelo by Rare Disease Day

Pertenecemos a un grupo de ayuda a pequeños que padecen alopecia areata, total y universal.

Que sepan que no están solos y que son hermosos tal y como son.
Spencer's 4th grade class by Rare Disease Day

My son Spencer educated his WHOLE SCHOOL about his rare disease (EoE) over morning announcements this morning. He then led a question/answer session with his 4th grade class.
CSL Behring: King of Prussia, PA by Rare Disease Day

CSL Behring: Employees from the headquarters in King of Prussia, Pennsylvania, raise their hands in support of Rare Disease Day! CSL Behring is a biotherapies company committed to saving lives and improving the quality of life for people with rare and serious diseases worldwide.
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.
Zumba Human Heart by Rare Disease Day

Around 40 adults and children made a human heart during a Zumba class yesterday in honor of this day. One of my ex-students has a daughter,Leïla, who has a rare metabolism disease. She asked us to help raise awareness of rare diseases by taking part in the Joining Hands Day. We were happy to help!
Ecuador Raise their hands by Rare Disease Day

Totally committed
Lachlan and Zachiri by Rare Disease Day

Lachlan suffers from Periodic Hypothermia
Tous solidaires pour l'HTAP à Maubourguet by Rare Disease Day

Ils étaient très nombreux venus pour jouer au loto du rugby à Maubourguet dans les Hautes Pyrénes, une occasion unique pour montrer leur solidarité avec les patients atteints d'Hyper Tension artérielle Pulmonaire (HTAP). Sans hésiter ils ont tous levé les mains!
Raising my Hand for Rare Diseases Without Borders by Rare Disease Day

I am living with narcolepsy and an undiagnosed neurological condition. I raise my hand to support rare disease day because I believe that one day people won't have to wait years for a diagnosis like I have. I believe through worldwide connections between patients, doctors and researchers can acheive this dream!
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.
hands across the sand - 2015 - 5161665 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 - 5170023 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
Bayada Pediatrics Joins Hands for Rare Disease Day by Rare Disease Day

We provide home health care to children with special needs, many of whom have rare diseases. We want to show our support and encouragement to all families who are affected by a rare disease.

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.
hands across the sand - 5170240 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 - 4885 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 - 2015 - 5161712 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 2016 - 5211275 by bill doyle

hands across the sand 2016, glenelg beach, adelaide, south australia

 

because BP has no right to risk the great australian bight!

 

BP - of deepwater horizon fame - proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world

 

#joinHANDS

#FightfortheBight
OIF Staff photo- Rare Disease by Rare Disease Day

Along with many other rare disease organizations and advocates, the Osteogenesis Imperfecta (OI) Foundation honors the millions of people worldwide living with a rare disease. Let's Join Together for Better Care! Happy Rare Disease Day 2014!
Hands Across the Sand, Morro Bay, CA, June 26, 2010 by Teddy Llovet

Betty Winholtz (far left), Morro Bay Mayor Candidate, joined hands with others.

 

People from across the world in over 700 locations joined hands to say no to offshore oil drilling and yes to clean energy and renewables. www.handsacrossthesand.com/
Cycle4RARE Fiesole Tuscany by Rare Disease Day

Cycle4RARE Fiesole Tuscany
Ensemble la mobilisation continue ! by Rare Disease Day

Plus d'infos sur www.hypophosphatasia.eu
I love Rare Genes by Rare Disease Day

My daughter has WAGR Syndrome...ultra rare with under 400 documented cases worldwide. The IWSA (www.wagr.org) strives to support families around the globe and stimulate research to enhance the lives of those with WAGR/11p Deletion Syndrome.
CSL Supports Rare Disease Day! by Rare Disease Day

CSL Behring is a global leader in the plasma protein biotherapeutics industry. We research, develop, manufacture and market biotherapies that are used to treat serious and rare conditions. This photo is sent from Parkville, Australia.
CSL Supports Rare Disease Day! by Rare Disease Day

CSL Behring supports Rare Disease Day. This photo is sent from Parkville, Australia.
CRPS (complex regional pain syndrome) by Rare Disease Day

Let's raise awareness for all rare diseases! I am living w/ CRPS (complex regional pain syndrome) & am hoping for a cure. ☀️ www.crpsforum.com
trisomia 9 mosaico by Rare Disease Day

Trisomia 9 mosaico
Volo di Pegaso event for Rare Disease by Rare Disease Day

Art and Science event of “Il volo di Pegaso” Prize-giving of the literary and artistic competition.
by steve p2008
my supportive colleagues by Rare Disease Day

My supportive colleagues for my son Anton, who has microdeletion 22q11.2.
hands across the sand - 4927 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
Aniridia by Rare Disease Day

Hello! I represent the Russian organization with aniridia patients. In the picture, my daughter Lisa.
"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
Centre for Medical Genetics, Vilnius by Rare Disease Day

Centre for Medical Genetics wishes a Happy RDD 2016!
hands across the sand 2018 - 0735 by bill doyle

the wilderness society SA's campaign coordinator cristel chambers performing MC duties

 

hands across the sand 2018, semaphore beach, adelaide, south australia

  

because no oil company has the right to risk the great australian bight!

  

norwegian company statoil recently changed its name to equinor and promises to shift its operations towards clean energy production, but it still proposes to undertake offshore drilling operations in the bight in south australian waters, threatening one of the most pristine marine habitats in the world

  

#joinHands

#UnderwaterWilderness

#FightForTheBight
Supporting Rare Diseases Day - 2 by Rare Disease Day

We all need to work together to succeed!
Joining together for better care in Finland by Rare Disease Day

Joining together for better care in Finland

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