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The rare disease films raising greater awareness

Twins Lucy Smyth and Zoe Buxton have a condition that is considered one of the rarest in the world.

United kingdomCounty antrimNorthern irelandNiall mccrackenPatrick tolandZoe buxtonLucy smythNorthern ireland rare disease partnershipNorthern ireland rare diseases implementation groupFrank foundationDepartment of healthRare storiesFibrodysplasia ossificans progressiva

Horizon Therapeutics plc Announces 2023 RAREis Global Advocate Grant Recipients

Horizon Therapeutics plc Announces 2023 RAREis Global Advocate Grant Recipients
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Nederlandse leverpatienten verenigingEimear rigbyAssociazione italiana sindromeDistrofia brasilMatt fleschRareis instagramMichelle rivasA italia famiglieBeck fahrner syndrome foundationRare disease ghana initiativeChordoma foundationSyndrome foundationInternational gaucher allianceErdheim chester disease global allianceInternational patient organisation for primary immunodeficienciesCholestasis network

Horizon Therapeutics plc Announces 2023 #RAREis Global Advocate Grant Recipients

Fifty patient advocacy organizations from around the world awarded a $5,000 grant to address unique challenges faced in rare disease communities .

Nederlandse leverpatienten verenigingMatt fleschDistrofia brasilAssociazione italiana sindromeA italia famiglieEuropean huntington associationNorthern ireland rare disease partnershipGlanzmann research foundation incPhilippine society for orphan disorders incRecurrent respiratory papillomatosis foundationAlliance for pulmonary hypertensionBulgarian society of the patientsPediatric epilepsy surgery allianceFoundation for sarcoidosis researchOsteogenesis imperfecta foundationBones inc

Derry support group seeks to help those living with a rare condition

The North West Rare Disease Support Group want to reach out to those living with a rare condition in the community

Sandra campbellRosaline callaghanNi assemblyParty group on rare diseaseCaroline mcferran community navigatorHealth professionalsNorthern ireland rare disease partnershipNorth west rare disease support groupHolywell trustNorthern irelandRare disease virtual support hubAll party groupRare diseaseNorth west support groupNorth westAmyloidosis ireland

Derry woman living with rare condition working to raise awareness

The condition is more unusual as it is geographically specific; all those diagnosed have familial connection to NW Donegal

Donegal amyRosaline callaghanNorthern ireland rare disease partnershipAmyloidosis all ireland support groupFacebook support groupDerry newsNorth westMotor neuron diseaseNorthern irelandAll ireland supportRare diseaseHereditary amyloidosis