viernes, 17 de mayo de 2019

Living with a Rare Disease: stories from patients and families

Living with a Rare Disease: stories from patients and families





Sergio's Story (subtitled)4.03.20193:28
SoulGreg Artist - My Eternal Love28.02.20184:47
Pensavo di essere diverso - Documentario (Sub Eng)6.12.201818:58
Living in a Body of Open Wounds with Less than Half His Skin (Epidermolysis Bullosa)7.12.201814:24
The impact of myeloma on a carer11.08.20173:47
Emotional effects of living with myeloma11.08.20174:28
Short Bowel Syndrome with Intestinal Failure – Patient Stories: Joel7.09.20174:18
Short Bowel Syndrome with Intestinal Failure – Patient Stories: Hayley C14.11.20173:42
Short Bowel Syndrome with Intestinal Failure – Patient Stories: Rosie30.08.20184:18
Short Bowel Syndrome with Intestinal Failure – Patient Stories: Hayley T14.11.20173:58
Short Bowel Syndrome with Intestinal Failure – Patient Stories: Leo23.03.20184:55
VWM Families Foundation: Sam's Story3.07.20186:33
This is Michelle28.11.20168:08
Sophie's Search for a Cure – Multiple System Atrophy23.09.20181:04:44
Life of Impact: Claire Wineland at TEDxMalibu2.02.201311:47
THE LAST REMAINING LIGHT25.06.201815:52
Aniridia: My Story15.02.20184:10
A True Story by Bee For Battens, with Lisa Hannigan19.04.20120:47
Butterfly Children: Raed's Story | CNA Insider3.03.20185:26
CELI4 p- / Look at the person and not the disease. Short film.16.04.20186:03
International Ataxia Awareness Day 2017 in Pakistan by Bin Adam Foundation28.09.201721:31
Duchenne - A 360 documentary5.09.20178:19
Ella's Communication14.06.20172:06
John's True Self6.07.20175:44
Still Standing10.07.20174:48
CORTO MIO FRATELLO ENGLISH SUB LR17.07.20174:05
Adalia Rose5.06.20173:52
When a heroic teacher talks about his disabled son, the entire class is moved to tears.24.03.201712:03
Liver patients are fed up19.04.20173:47
Alstrom Syndrome 'Living with a Rare Disease'10.05.20176:33
Rebecca's story3.03.20174:26
Lucy's story1.03.20173:37
Ellie's story28.02.20174:26
Self Help Groups - SHG for Aortic Dissection survivors5.12.20162:05
Haemophilia stories25.01.201752:38
What is Alpha-1?26.10.20167:03
A GYMNAST WITH ONE LUNG?! || Believe In Your Abilities14.10.20161:29
The Mike Olsen Project15.02.20168:40
NEU Your support makes a difference... ut12.04.20165:50
Human Timebombs - Winner at Neuro Film Festival1.03.20165:00
The MUltiple System Atrophy Coalition: A Call to Action1.12.20153:49
Parents Talking About The Chromosome 18 Registry & Research Society21.09.20155:02
Rett Syndrome: One brave little girl's battle with the rare disease6.01.20165:00
2 Women With Jarcho Levin Syndrome to Meet for First Time13.04.20161:22
RETT: There is Hope (Full Movie)1.10.201551:45
Two families living with a FOXP1 gene mutation meet in person16.09.201530:06
Mi vida conmigo - Vivir con FOP/My life with myself - Living with FOP (English subtitles)21.08.201514:15
My Face: Waardenburg Syndrome1.02.20159:13
IMAGINE - Short Film - Niemann-Pick C13.06.20159:51
The Girl Behind The Face | Rog Thomas, Tina Thomas & Mui Thomas | TEDxHongKongED29.07.201516:35
VF Extraordinary Vasculitis Stories: Belinda and Behcets Disease8.10.201311:37
PSC Awareness18.06.20151:08
Hereditary Spherocytosis: A Patient's Journey7.09.20107:14
Wilhelm Foundation Malou Efter tio TV47.06.201513:58
A Leap Forward in Rare Disease Treatment26.05.201511:54
Amazing Kids: Sam17.02.20123:23
Family stories: Pitt Hopkins Syndrome18.09.20145:45
The Rarest Ones - Dompé23.02.20151:27
Rare Disease: A family's journey24.02.20157:04
Uncovering Rare Disease: Erdheim-Chester Disease (ECD) Description9.11.20132:47
A Patient's Journey toward a Pemphigus Vulgaris Diagnosis9.12.201412:11
How do you define yourself? Lizzie Velasquez at TEDxAustinWomen16.01.201413:11
Living with Panhypopituitarism30.12.20148:23
HSP Video31.12.20142:16
Living with NP-C: The Poincilit Family (english)5.04.201113:12
A Normal Life: Cockanye Syndrome8.11.20145:28
Guided Reading With Girls With Rett Syndrome29.03.20143:40
Undiagnosed Kickstarter Trailer3.06.20145:00
Issues with my Tissues19.01.201548:01
Rare Disease Challenges Support for Patients & Families10.12.201415:39
about a mother - director's cut12.12.20145:13
8-Year-Old Raises More Than Half a Million Dollars to Help Cure His Friend27.02.20142:08
Tuxes for Tia4.10.20135:48
Dravet syndrome families unite29.10.20142:48
PSPA - Keith's Story30.10.20138:32
Cushing's Symptoms & Diagnosis - Melissa's story28.10.20144:33
Ordinary People, Extraordinary Lives - EN1.09.20141:52
little ambassador - Avery2.05.20113:15
One-2-One: Jordanne Whiley8.05.20143:18
Living with Progressive familial intrahepatic cholestasis (PFIC)19.03.20141:41
Healing Hemp | The New York Times28.08.20144:41
Meet ELO, a special teddy bear from Amaral Carvalho Hospital in Brazil14.04.20143:46
Multiple Endocrine Neoplasia explained to children23.05.20143:51
What Is Kallmann Syndrome? Part 12.04.20149:24
José Carreras Leukaemia Foundation - 'La Fleur' documentary. English subtitles.2.06.20141:07:24
Run to Live - 2013 Documentary 4K15.03.20148:32
Strech Out! (Full Video)13.11.201338:40
Me, Myself and O.I.9.04.20147:15
MECP2 Duplication and Hope for Families15.03.20145:03
Documentary: Hope For Hayley - Extraordinary People 201312.01.201448:10
Rex Griswold's Quest to Cure MSA26.09.20138:02
The Partingtons - Double the Hope28.11.20114:09
Ariella's Story - Living with familial Mediterranean fever26.06.20134:06
FTD - Planning for Hope: Living with Frontotemporal Disease, a 1-hr documentary film6.11.201156:58
Luke's Story - a Genetic Disorders UK / Jeans for Genes Day film14.08.20125:06
Team Bradster - Documentary8.01.201314:01
Rett Syndrome: A Father's Words16.11.20139:52
AHC INTERNATIONAL ALLIANCE15.10.20133:27
Living with Alström Syndrome30.09.201314:31
Finding a cure - Rett Syndrome and MECP2 Disorders25.09.20133:31

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