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The Love of Evy by Rare Disease Day

This is Evelyn. She is 8yrs old and has been diagnosed with Chromosome 22q11.2 Duplication Syndrome. I adopted Evelyn about a year ago and she is the joy of my life. Her smile brightens a room and her giggle is contagious.
raise your hands for rare diseases by Rare Disease Day

Taken at the rare disease information cafe at the Barrie Community Health Center
Mitochondrial Research Group: Newcastle University by Rare Disease Day

The Wellcome Trust Centre for Mitochondrial Research is an internationally recognised centre of excellence. We aim to make a major difference to the lives of patients with disease caused by mitochondrial dysfunction. We will be holding an information session with cakes at the Royal Victory Infirmary on Friday the 28th to celebrate Rare Disease Day 2014
In honor of Adam Horger! Raised our hands for Rare Disease Day 2014! by Rare Disease Day

The Wellness Program of the American University of Sharjah, organized a 5K run to raise awareness for Rare Diseases.
Inspiration by Rare Disease Day

I will continue to bring hope and awareness to those of us fighting FMD!! We have come so far but have so much more to do! # weneedreasearch
FPIES: Rare but Real! by Rare Disease Day

Sam is 4yrs old and is raising awareness to rare diseases with awareness to his rare diagnosis: FPIES, Food Protein Induced Enterocolitis Syndrome. Sam is allergic to multiple foods that when eaten, damage his intestines with inflammation resulting in malabsorption and colitis . He is a silly and clever preschooler and is proud to be strong and raising his hands for solidarity in rare diseases. He is not alone!
#‎Pseudohypoparathyroidism/Albrights Hereditary Osteodystrophy by Rare Disease Day

We are very thankful for Rare Disease Day and raising awareness for all who deal with a rare disease. # Alone we are rare but together we are strong. Thank you for all the support!
Hands Across The Sand by allison_b216

www.handsacrossthesand.org
hands across the sand - 5170266 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 - 5211457 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
Hands up for Rare Diseases by Rare Disease Day
Klipple file syndrome by Rare Disease Day

Never give up!
Raise your hands for Grant and Eli!! by Rare Disease Day

Grant (4) and Eli (5mo) suffer from Salla disease. Their parents, grandparents, aunts, uncles, and cousins came together to celebrate Rare Disease Day and the uniqueness and love that these two boys have brought to our family.
Maltese Prime Minister joins hands with persons with Rare Disorders on RDD 2013 by Rare Disease Day

The Prime Minister of Malta, Dr Lawrence Gonzi, marks Rare Diseases Day 2013 by joining hands with Philip Chircop (3rd from L),President of the Malta Blood Donors Association, accompanied by persons with rare conditions or disorders, at the Prime Minister's Office in Valletta 28.02.13.

Prime Minister's message: "Every person's LIFE and their Quality of Life is altogether IMPORTANT for us".
Joining Hands for Rare Disease Day 2013 by Rare Disease Day

The Association for the Wellbeing of Children in Healthcare is celebrating its 40th Anniversary in 2013. AWCH is unique among non-profit organisations in that we are the only group in Australia to focus entirely on the emotional and social needs of children and young people in healthcare. We have been directly responsible for advances made in the non-medical care of children including parents staying in hospital with their children, open visiting hours, recognition of the importance of play and education facilities, and increased parental involvement in all aspects of their child’s hospital care.

 

As part of our celebrations, we joined hands in support of Rare Disease Day to give hope to rare disease patients around the world.
Raising hands at a Congress by Rare Disease Day

Involving people in raising their hands at a Congress on RD
Anahuac Mayab University by Rare Disease Day

Hello everyone!

Students of medicine at the Universidad Anahuac Mayab in Merida, Mexico, also support the rare disease day!!
hands across the sand - 4896 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
Department of Medical Genetics & Genomic Medicine at Saint Peter' by Rare Disease Day

Brothers Nelson and Jose Rosales Ovalles joined the staff of the Department of Medical Genetics and Genomic Medicine during the first annual educational event held at Saint Peter's University Hospital to mark Rare Disease Day. Jose, a poet, gave a testimonial about life with a rare disease.
Day-by-day, hand-in-hand by Rare Disease Day

"Elämässä etiäpäin... mikä auttaa jaksamaan? -niin, mikä saa sinut jaksamaan taivallusta täällä? Pysähdyin miettimään... ja mietin vieläkin. Ja varmaan loppuelämäni. Koska vastauksia on miljoonia. Ja vastaukset vaihtuvat hetkittäin.

"Ahead in life... What helps you get by? How do you continue on your journey of life? I stopped to think, and I continue to think. And probably will for the rest of my life. To this question there is a million answers. The answer will change in a heartbeat."

-anonymous
Pfizer Austria employees show solidarity with rare disease patients by Rare Disease Day

Generating innovative medicines that may have a positive impact on world health is Pfizer's core mission. Our current pipeline includes products in development across more than ten different rare diseases. In Austria we work every day to make these innovative treatments available to people with genetic and rare disorders.
hands across the sand - 5170004 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
Adrenochrome by Trixie Pixie

bagoftrixsl.wordpress.com/2015/05/11/solo-post-adrenochrome/
Berritxuak por las ER by Rare Disease Day

Los Berritxuak nos hemos unido por las ER un año mas. El año que viene repetiremos.
Genetically Define Diseases Discovery group by Rare Disease Day

This is just one of the teams working to help patients at Bristol-Myers Squibb.
the steve irwin in port adelaide - 8190900 [mono] by bill doyle

Crew members including The Wilderness Society's Peter Owen, Sea Shepherd's Jeff Hansen, conservation legend Bob Brown, Sea Shepherd's Geoffrey Cann, and Mirning elder Bunna Lawrie.

 

The MY Steve Irwin sails in to Port Adelaide as part of Operation Jeedara, the Great Australian Bight Alliance's campaign opposing BP's plans to drill in the Great Australian Bight.

 

#FightForTheBight

#OperationJeedara
At my 50th Birthday Dinner with our two daughters Adrienne & Alexandra Zeleznak by Rare Disease Day

Along with my husband of 26+ years Randy Zeleznak (the photographer of this picture) and our beloved daughters Adrienne & Alexandra (in the picture with me), we are a powerful family unit who support each other in everything. These girls have had to sacrifice SO much due to my illness, as has my husband. Yet they would never ever complain about having had to do so, because their love for me is more important to them than are their inconvenient sacrifices. I am THE luckiest Mom in the world to have 'these' two as my 'baby' girls (even though they're 25 and 23 respectively now!), and it is because of their loving support, as well as my husband's, that I am emotionally 'able' to withstand all the ignominies and worse that my disease, idiopathic systemic vasculitis et al, has seen 'fit' to 'gift' me with since its' onset out-of-the-blue in August of 1994 at age 32. It is for THEM that I endure all that vasculitis, and medical treatment for vasculitis, has seen 'fit' to 'bestow' upon me.
hands across the sand 2018 - 0885 by bill doyle

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
Raise and join hands for Rare Disease Day - Direção Regional da Saúde da Região Autónoma dos Açores by Rare Disease Day

Raise and join hands for Rare Disease Day - Direção Regional da Saúde da Região Autónoma dos Açores
Rare Disease Day )Histiocytosis) by Rare Disease Day

Spreading awareness on Rare disease day for my Daughter Makayla (on the far right). She was born with Langerhan Cell Histiocytosis.
EURORDIS Policy Event participants Raising and Joining Hands for Better Care! by Rare Disease Day

25 February 2014, Brussels
Showing solidarity by Rare Disease Day

A litle group o people showing silidarity for the patients
Caroline and Kelly Rare Disease Day 2015 by Rare Disease Day

Caroline and I celebrate people living with WAGR/11p Deletion Syndrome, we mourn those we have lost, and we look forward to the future with renewed determination and HOPE!
Together we Can!!! by Rare Disease Day

To all my fellow "brothers and sisters" with rare diseases, I'm raising my hand for our solidarity. My disease, EDS won't stop me and neither can yours! Alone I am rare, together we are strong!!!
Cuttsy and Cuttsy raise their hands. by Rare Disease Day

Join us and ‘Raise and Join Hands for Rare Disease Day’.
Charity Roadtrippers Hand in Hand by Rare Disease Day

this is some of our charity road trip fundraisers again recreating our logo which ties in with this year's RDD theme
The Committee for Orphan Medicinal Products (COMP) raise and join hands for Rare Disease Day 2014! by Rare Disease Day

The Committee for Orphan Medicinal Products (COMP) raise and join hands for Rare Disease Day 2014 at the European Medicines Agency in London!
FLASH MOB AISMAC CATANIA 2020 catania by Rare Disease Day

Diamo forza all'albero raro aismac catania 2020
Limburg for #rarediseaseday by Rare Disease Day

Raising hands for #rarediseaseday @ our local patient meeting in the Limburg
"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
hands across the sand 2016 - 5210075 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
hands across the sand - 5406 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 United by Rare Disease Day

Two classes, JüL1G1 (mixed group of years 1&2 and 10/5, created a poster with their hands on it for the Open Day at our school, which is also Rare Disease Day. So we decided to combine the events.
Matilde, trisomia 9M, con la sua famiglia by Rare Disease Day

Matilde di Salerno - trisomia 9 a mosaico - con la sua famiglia per la giornata delle malattie rare 2015
T Ballers raise the hands for Rare Disease Day 2015 by Rare Disease Day

On a overcast Saturday morning the Arrows Softball club and Endeavour Wave Softball club T Ball teams from Sydney Australia came together to "Raise hands for Rare Disease" in support of their mate Finlay who is diagnosed with 5q33.2-35.1 deletion, Arnold Chiari Malformation II,syringomyelia and Coach Sally who has Keracotonus
Because WE CARE for RARE by Rare Disease Day

This photo was taken during our Symposium for Rare Disease Awareness and it opened our minds and hearts as well on how these things are important for us to know. These students are from University of Cebu-Banilad Campus College of Nursing.
Hugo´s Stargardt Eyes by Rare Disease Day

One year ago, 5th march, Hugo began losing his sight. He has a Stargardt Disease and we are trying to live with day by day.

Thanks for your support and for letting us know we are not alone.

 

His mother, Ana
rare diseases day ukraine by Rare Disease Day

26th of FEB 2015
hands across the sand - 5270 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 - 5170175 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

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