Related: Rare Disease Day: Family tell of vital support for rare genetic condition
A UN resolution on rare diseases that was adopted in December could help create opportunities for people living with uncommon medical conditions.
Government officials and non-profit organisations celebrated the resolution on Rare Disease Day — February 28 — during an event at Expo 2020 Dubai.
More than 7,000 rare diseases that have been identified so far and these affect about 400 million people globally. Seventy-two per cent of these illnesses are genetic and an estimated 7.8 million people in the Middle East live with a rare disease today — three quarters of them are children.
However, there had been little visibility for people with rare diseases, including a lack of public awareness that resulted in greater risk of social exclusion and many forms of discrimination.
Women are disproportionately discriminated against and stigmatised
Flaminia Macchia,
executive director, Rare Diseases International
It is hoped that the resolution, that passed with support from all 193 members of the UN General Assembly, will help create global and national-level policies to help people suffering from rare illnesses such as muscular dystrophies or Huntington’s disease.
“Getting the UN resolution really gave an impetus and gave a lot of energy to national patient groups to go to their own policymakers and put rare diseases on the table,” said Flaminia Macchia, executive director of Rare Diseases International.
“It also further connected the international movement to work together towards a major common goal and we do feel that we feel closer.
“It gives immediate global visibility to an invisible population. It also means that the challenges of this population are now also visible and recognised."
Ms Macchia said the next steps involve moving towards social justice and equity, including access to education, and finding and maintaining work.
She said women with rare diseases are especially discriminated against, and that there needs to be gender equality.
“Women are disproportionately discriminated against and stigmatised,” she said.
The resolution also addresses solutions such as strengthening healthcare systems, international networks and collaboration.
Ms Macchia said that the UN resolution would help drive global and local change in healthcare systems.
“Stronger healthcare systems will better support universal health coverage for rare diseases. For this very specific health-related aspect, we will work closely with the World Health Organisation," she said.
“The resolution empowers us as a community and opens the door towards other UN bodies, agencies and programmes in order to truly address rare diseases holistically.”
Dr Maryam Matar, founder and chairwoman of the UAE Genetic Diseases Association, said that until the group was formed in 2004, there were no organisations in the Emirates to help people with rare diseases.
Since then, the UAE has made many strides in helping people of determination, especially those with rare diseases, including legislation that makes it illegal to discriminate against patients.
“At that time, there was not a single organisation where the patient and their family could come forward and talk about it,” she said.
“So, we started with some common genetic diseases like hemoglobinopathies, and specifically glucose-6-phosphate dehydrogenase, thalassaemia and sickle-cell anaemia.”
She said they carried out public awareness campaigns about availability, accessibility and affordable diagnoses, management and treatment.
The event at Expo 2020 Dubai involved a parade, musical performances and a speech — all aimed at boosting awareness about rare diseases.
Al Wasl Dome was also lit up with blue, green, pink, and purple lights, the official colours of Rare Disease Day.
Coldplay perform at Expo - in pictures
PROFILE OF HALAN
Started: November 2017
Founders: Mounir Nakhla, Ahmed Mohsen and Mohamed Aboulnaga
Based: Cairo, Egypt
Sector: transport and logistics
Size: 150 employees
Investment: approximately $8 million
Investors include: Singapore’s Battery Road Digital Holdings, Egypt’s Algebra Ventures, Uber co-founder and former CTO Oscar Salazar
The National's picks
4.35pm: Tilal Al Khalediah
5.10pm: Continous
5.45pm: Raging Torrent
6.20pm: West Acre
7pm: Flood Zone
7.40pm: Straight No Chaser
8.15pm: Romantic Warrior
8.50pm: Calandogan
9.30pm: Forever Young
The specs
- Engine: 3.9-litre twin-turbo V8
- Power: 640hp
- Torque: 760nm
- On sale: 2026
- Price: Not announced yet
KILLING OF QASSEM SULEIMANI
The specs
Engine: 6.2-litre supercharged V8
Power: 712hp at 6,100rpm
Torque: 881Nm at 4,800rpm
Transmission: 8-speed auto
Fuel consumption: 19.6 l/100km
Price: Dh380,000
On sale: now
Springtime in a Broken Mirror,
Mario Benedetti, Penguin Modern Classics
Squad for first two ODIs
Kohli (c), Rohit, Dhawan, Rayudu, Pandey, Dhoni (wk), Pant, Jadeja, Chahal, Kuldeep, Khaleel, Shami, Thakur, Rahul.
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Key recommendations
- Fewer criminals put behind bars and more to serve sentences in the community, with short sentences scrapped and many inmates released earlier.
- Greater use of curfews and exclusion zones to deliver tougher supervision than ever on criminals.
- Explore wider powers for judges to punish offenders by blocking them from attending football matches, banning them from driving or travelling abroad through an expansion of ‘ancillary orders’.
- More Intensive Supervision Courts to tackle the root causes of crime such as alcohol and drug abuse – forcing repeat offenders to take part in tough treatment programmes or face prison.
COMPANY%20PROFILE
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The Limehouse Golem
Director: Juan Carlos Medina
Cast: Olivia Cooke, Bill Nighy, Douglas Booth
Three stars
The specs: 2018 Harley-Davidson Fat Boy
Price, base / as tested Dh97,600
Engine 1,745cc Milwaukee-Eight v-twin engine
Transmission Six-speed gearbox
Power 78hp @ 5,250rpm
Torque 145Nm @ 3,000rpm
Fuel economy, combined 5.0L / 100km (estimate)
Profile of RentSher
Started: October 2015 in India, November 2016 in UAE
Founders: Harsh Dhand; Vaibhav and Purvashi Doshi
Based: Bangalore, India and Dubai, UAE
Sector: Online rental marketplace
Size: 40 employees
Investment: $2 million
North Pole stats
Distance covered: 160km
Temperature: -40°C
Weight of equipment: 45kg
Altitude (metres above sea level): 0
Terrain: Ice rock
South Pole stats
Distance covered: 130km
Temperature: -50°C
Weight of equipment: 50kg
Altitude (metres above sea level): 3,300
Terrain: Flat ice
Pharaoh's curse
British aristocrat Lord Carnarvon, who funded the expedition to find the Tutankhamun tomb, died in a Cairo hotel four months after the crypt was opened.
He had been in poor health for many years after a car crash, and a mosquito bite made worse by a shaving cut led to blood poisoning and pneumonia.
Reports at the time said Lord Carnarvon suffered from “pain as the inflammation affected the nasal passages and eyes”.
Decades later, scientists contended he had died of aspergillosis after inhaling spores of the fungus aspergillus in the tomb, which can lie dormant for months. The fact several others who entered were also found dead withiin a short time led to the myth of the curse.
10 tips for entry-level job seekers
- Have an up-to-date, professional LinkedIn profile. If you don’t have a LinkedIn account, set one up today. Avoid poor-quality profile pictures with distracting backgrounds. Include a professional summary and begin to grow your network.
- Keep track of the job trends in your sector through the news. Apply for job alerts at your dream organisations and the types of jobs you want – LinkedIn uses AI to share similar relevant jobs based on your selections.
- Double check that you’ve highlighted relevant skills on your resume and LinkedIn profile.
- For most entry-level jobs, your resume will first be filtered by an applicant tracking system for keywords. Look closely at the description of the job you are applying for and mirror the language as much as possible (while being honest and accurate about your skills and experience).
- Keep your CV professional and in a simple format – make sure you tailor your cover letter and application to the company and role.
- Go online and look for details on job specifications for your target position. Make a list of skills required and set yourself some learning goals to tick off all the necessary skills one by one.
- Don’t be afraid to reach outside your immediate friends and family to other acquaintances and let them know you are looking for new opportunities.
- Make sure you’ve set your LinkedIn profile to signal that you are “open to opportunities”. Also be sure to use LinkedIn to search for people who are still actively hiring by searching for those that have the headline “I’m hiring” or “We’re hiring” in their profile.
- Prepare for online interviews using mock interview tools. Even before landing interviews, it can be useful to start practising.
- Be professional and patient. Always be professional with whoever you are interacting with throughout your search process, this will be remembered. You need to be patient, dedicated and not give up on your search. Candidates need to make sure they are following up appropriately for roles they have applied.
Arda Atalay, head of Mena private sector at LinkedIn Talent Solutions, Rudy Bier, managing partner of Kinetic Business Solutions and Ben Kinerman Daltrey, co-founder of KinFitz
Emergency phone numbers in the UAE
Estijaba – 8001717 – number to call to request coronavirus testing
Ministry of Health and Prevention – 80011111
Dubai Health Authority – 800342 – The number to book a free video or voice consultation with a doctor or connect to a local health centre
Emirates airline – 600555555
Etihad Airways – 600555666
Ambulance – 998
Knowledge and Human Development Authority – 8005432 ext. 4 for Covid-19 queries
Indoor Cricket World Cup Dubai 2017
Venue Insportz, Dubai; Admission Free
Fixtures - Open Men 2pm: India v New Zealand, Malaysia v UAE, Singapore v South Africa, Sri Lanka v England; 8pm: Australia v Singapore, India v Sri Lanka, England v Malaysia, New Zealand v South Africa
Fixtures - Open Women Noon: New Zealand v England, UAE v Australia; 6pm: England v South Africa, New Zealand v Australia
88 Video's most popular rentals
Avengers 3: Infinity War: an American superhero film released in 2018 and based on the Marvel Comics story.
Sholay: a 1975 Indian action-adventure film. It follows the adventures of two criminals hired by police to catch a vagabond. The film was panned on release but is now considered a classic.
Lucifer: is a 2019 Malayalam-language action film. It dives into the gritty world of Kerala’s politics and has become one of the highest-grossing Malayalam films of all time.
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The Pope's itinerary
Sunday, February 3, 2019 - Rome to Abu Dhabi
1pm: departure by plane from Rome / Fiumicino to Abu Dhabi
10pm: arrival at Abu Dhabi Presidential Airport
Monday, February 4
12pm: welcome ceremony at the main entrance of the Presidential Palace
12.20pm: visit Abu Dhabi Crown Prince at Presidential Palace
5pm: private meeting with Muslim Council of Elders at Sheikh Zayed Grand Mosque
6.10pm: Inter-religious in the Founder's Memorial
Tuesday, February 5 - Abu Dhabi to Rome
9.15am: private visit to undisclosed cathedral
10.30am: public mass at Zayed Sports City – with a homily by Pope Francis
12.40pm: farewell at Abu Dhabi Presidential Airport
1pm: departure by plane to Rome
5pm: arrival at the Rome / Ciampino International Airport
Specs
Engine: Electric motor generating 54.2kWh (Cooper SE and Aceman SE), 64.6kW (Countryman All4 SE)
Power: 218hp (Cooper and Aceman), 313hp (Countryman)
Torque: 330Nm (Cooper and Aceman), 494Nm (Countryman)
On sale: Now
Price: From Dh158,000 (Cooper), Dh168,000 (Aceman), Dh190,000 (Countryman)
FA CUP FINAL
Manchester City 6
(D Silva 26', Sterling 38', 81', 87', De Bruyne 61', Jesus 68')
Watford 0
Man of the match: Bernardo Silva (Manchester City)
Living in...
This article is part of a guide on where to live in the UAE. Our reporters will profile some of the country’s most desirable districts, provide an estimate of rental prices and introduce you to some of the residents who call each area home.
COMPANY PROFILE
Name: Kumulus Water
Started: 2021
Founders: Iheb Triki and Mohamed Ali Abid
Based: Tunisia
Sector: Water technology
Number of staff: 22
Investment raised: $4 million
Silent Hill f
Publisher: Konami
Platforms: PlayStation 5, Xbox Series X/S, PC
Rating: 4.5/5
DEADPOOL & WOLVERINE
Starring: Ryan Reynolds, Hugh Jackman, Emma Corrin
Director: Shawn Levy
Rating: 3/5
Company profile
Company: Verity
Date started: May 2021
Founders: Kamal Al-Samarrai, Dina Shoman and Omar Al Sharif
Based: Dubai
Sector: FinTech
Size: four team members
Stage: Intially bootstrapped but recently closed its first pre-seed round of $800,000
Investors: Wamda, VentureSouq, Beyond Capital and regional angel investors
UAE currency: the story behind the money in your pockets
Specs
Engine: 51.5kW electric motor
Range: 400km
Power: 134bhp
Torque: 175Nm
Price: From Dh98,800
Available: Now
<html><head><meta http-equiv="Content-Type" content="text/html" charset="UTF-8" /></head><body><!--PSTYLE=* Labels%3aFH Label 18 Sport--><p>Beach soccer</p><!--PSTYLE=BY Byline--><p>Amith Passela</p><p /></body></html>
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UAE squad
Esha Oza (captain), Al Maseera Jahangir, Emily Thomas, Heena Hotchandani, Indhuja Nandakumar, Katie Thompson, Lavanya Keny, Mehak Thakur, Michelle Botha, Rinitha Rajith, Samaira Dharnidharka, Siya Gokhale, Sashikala Silva, Suraksha Kotte, Theertha Satish (wicketkeeper) Udeni Kuruppuarachchige, Vaishnave Mahesh.
UAE tour of Zimbabwe
All matches in Bulawayo
Friday, Sept 26 – First ODI
Sunday, Sept 28 – Second ODI
Tuesday, Sept 30 – Third ODI
Thursday, Oct 2 – Fourth ODI
Sunday, Oct 5 – First T20I
Monday, Oct 6 – Second T20I
The Penguin
Starring: Colin Farrell, Cristin Milioti, Rhenzy Feliz
Creator: Lauren LeFranc
Rating: 4/5
Monster Hunter: World
Capcom
PlayStation 4, Xbox One
